Category Archives: Guest Blogger

by | July 26, 2023 · 2:44 PM

Ableist Assumptions:  How GCs Need to Pave the Path to Inclusivity and Fight Against the Harm of “Good Intentions”

by Devin Shuman

This month is the 33rd anniversary of the Americans with Disabilities Act (ADA) being signed into law and so has become Disability Pride Month. Most people started today unaware of either of these events and have likely never seen the Disability Pride Flag before. You won’t likely see companies changing their logo on social media to celebrate their disabled employees and customers. Disability awareness campaigns and sharing “inspirational” disability stories may be a common part of public discourse, but Disability Pride and the history of Disability culture are less commonly discussed. 

The ADA was an important milestone for the rights of people with disabilities. However, disability rights in the US have a much longer history than just the ADA and I encourage everyone reading this to take the time to learn about the larger Disability Rights Movement through resources like the movie CripCamp, the books listed at the end of this post, and by learning about specific events such as the Capitol Crawl or the Mad Pride Parade. The ADA is a moment in Disability history; it was not the end-all solution and disability discrimination and segregation still exists. 

Why do I care about this topic? 

  • Because 1 in 4 of American adults have a disability, making up over 13% of the general population, and it is the only demographic that we all will fall under at some point in our lives. 
  • Because countless barriers have led to an immense health disparity where 1 in 3 adults with a disability do not have a usual healthcare provider and 1 in 3 have unmet health care needs due to the cost of that care. 
  • Because I am a genetic counselor with a genetic disability. I identify as Disabled and work in a profession (genetics) with an entangled history and relationship with eugenics. 

As a genetic counselor (GC), I believe that we GCs are in a unique position to dismantle barriers disabled individuals face and to move healthcare away from the historical medicalized approach to disabilities, which views disabilities as a problem to solve or something to pity. Disability Pride Month is important because disability can be more than a diagnosis, it can be a community, a legacy, and a culture with our own art forms and language use. We have these ingrained assumptions that to be disabled is to be unhappy or isolated. But I am capital-D Disabled because this is my identity; one that brings me joy and connects me to a larger movement. Disabled is not a bad word. It is important to remember this, and to remember that disability conversations are not just relevant to patient care, but also how we interact with our coworkers and students.  

“Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled… Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.”

― Alice Wong

In graduate training I was taught about diagnoses from the medical perspective, i.e., defining a condition by its list of symptoms, and this does have an important role in medical training. However, only teaching the medical and social model or with case examples of disability culture (i.e., the Autistic and Deaf communities) gives the false impression that various models of disability are optional lenses to try on or a “special-interest” topic. When we view a positive test result as bad news, we’re defaulting to the tragedy model of disability. When we refer patients to diagnosis-focused foundations or organizations run by parents, we are often ensuring that the charity and inspirational models of disability are the first a patient encounters because that framing of disability is best for fundraising. When we frame a condition or disability as something to fight against (i.e., the epidemic of autism), we are framing someone’s very existence as something to be defeated. We can do better than this. 

I truly believe that the best way to improve how we counsel patients is to improve how we think about disability. Word choice is incredibly important, but just changing how we speak or write, while not changing how we think, means that we will continue to perpetuate outdated and detrimental ideas of disabilities as a problem to be solved. There are some easy changes in word choice we can all apply (see table at the end), but the harder part is checking our own privilege and realizing that we will spend our entire lives unrooting our ingrained biases.

Here are some quick gut-checks for ableist biases:

  • Have you ever seen a diagnosis on a patient chart, or a long list of them, and thought that this patient would likely be “crazy,” difficult, or a hassle?
  • Has your first thought upon seeing a positive test result been about the burden this is going to place on the family or have you started a disclosure with “I’m sorry?”
  • Have you shared “inspiring” videos of disabled people completing normal activities such as playing a sport, graduating school, getting married, or the videos of a kid using a hearing aid for the first time?
  • Have you told someone with a disability that you “get it” because you did a training about their condition, you once had to use a mobility aid after an injury, or you know someone with a similar condition?
  • When a patient doesn’t fit the textbook definition of a condition or does not provide an organized/linear medical or family history – have you considered that they are making it up or shouldn’t be believed due to being a “poor historian?”
  • Have you made the assumption that  all disabled individuals would want a cure, treatment, or therapy (such as those designed to teach disabled people to mask their symptoms)?
  • Do you use disability slurs like stupid, lame, dumb, idiot, blind, deaf, crazy, or insane, such as in reference to a politician you dislike?

As GCs, we can get caught up in excitement over the latest “cool” genetic testing technology available to patients. But, I don’t think we often take the time to pause and think about the implications of what we’re offering and the assumptions these offers make. With ASRM recommending health conditions that should disqualify oocyte donors, are they sending a message of  who is “worthy” of procreating or implying that their offspring wouldn’t be “optimal?” When ACMG recommends carrier screening tiers based on the “severity” of conditions, aren’t we telling Disabled people that their daily life is “impacted enough” to be a potential burden to their families and society? So many individuals who do not have disabilities and organizations decide they can speak for Disabled people and they know what is best for us. Our lives are held up as examples to justify discriminatory medical recommendations and political opinions, under the guise of “good intentions” they hijack the rhetoric of the disabilities right movement. If our voices aren’t included, and if we’re used as examples of reasons why more of us should be prevented from existing, you’re not promoting equity and inclusion. We often discuss disability rights only in the context of prenatal or preconception counseling, but being disabled is far more complex. It intersects with every single aspect of your life, and your relationship with it may change through every stage of your life. Within our current society, even existing in the world as someone disabled can be a radical act. 

I think as a GC, we often want to make things simple and easy for our patients, but we cannot fear the complex and our patients won’t be able to avoid their own complex interactions with society. I’ve seen GCs dodge talking about mental health family history and avoid testing that may result in variants of uncertain significance – and I truly believe this often stems from a preconceived notion that uncertainty is, by default, a burden. If we can’t offer a “cure” or a yes-or-no answer we may get uncomfortable or feel like we’re failing our patients and then assume our patients will also be uncomfortable. However, as someone with a progressive genetic syndrome, my entire life is uncertainty. We all carry thousands of genetic changes and dozens of genetic conditions – and we need to normalize that for our patients. All of our lives are uncertain. We need not shield our patients from this normal part of life based on the belief that genetic uncertainty is exceptionally difficult. We have to be careful that we’re not continuing the collective fiction that genetic testing somehow guarantees a particular predicted future. Just because we have good intentions doesn’t mean our actions do not perpetuate harm.

Providers may warn patients to avoid social media; however that is also where a disability identity and second-family may be found. Providers may not want to “burden” patients with too much information, though who gets to decide what information should be included? We put patient autonomy and informed consent as a top priority, but the medical field also will often restrict the rights of disabled patients, for example from deciding to transfer an embryo with a genetic syndrome during IVF. ASRM recommendations for egg and sperm donors promote both positive and negative eugenics through both private and public decisions. However, this puts an immense weight and emphasis on a test result – do they really give “yes or no” answers or holistic predictions about someone’s future? I think we all know that’s not true, and a genetic diagnosis (or lack thereof) is only one detail of a life being created. All pregnancies and futures are uncertain, that’s one of the joys of parenthood (and life) – very few things can truly be predicted. Our patients deserve the agency of making these decisions for themselves, with their priorities front and center, with information that’s not focused on easing the conversation at that moment or asking for an immediate decision. Our training makes us especially equipped to fight the patronizing approach of doctors knowing “best,” that was the norm in medicine for so long.

We are uniquely positioned to provide validation and support for our patients during the diagnostic odyssey, as we often have time to build those relationships and can be involved in the consent and disclosure process for genetic testing. To maintain our ability to support patients, we need to remind everyone that there is value in time spent with patients and push back against the increased pressure to shorten that time or have patients make decisions based on one-session with a GC. We need to continue to fight for unbiased GCs and to recognize that no decision is made in a bubble and even the best intentions of being non-directive, still exist within an ableist society. We need to remind ourselves that all patient reactions are normal – being overwhelmed, disorganized, confused, stress-free, happy, or proud. Our patients are not less validly disabled if they can work or if they’re on Social Security Disability Insurance (SSDI), if their disability is visible or invisible, if they have a known genetic etiology or not. What is not valid is for GCs to feel we have learned “enough” about disabilities, to approach a patient starting from a position of skepticism, to feel like some disabilities are more legitimate than others, or to think that we aren’t ableist because we may feel like we are more of an ally than other health professions. We are ALL ableist, even those of us who are also Disabled. 

“Navigating ableist situations is like traversing the muckiest mud pit. Ableism runs so deep in our society that most ableists don’t recognize their actions as ableist. They coat ableism in sweetness, then expect applause for their “good” deeds. Attempts to explain the ableism behind the “good deeds” get brushed aside as sensitive, angry, and ungrateful.”

― Haben Girm

One class in our training, one sponsored webinar, one panel at a national conference – none of these are one-stop-shops for retraining our brains to remove entrenched ableism. “We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism.” (Leah Lakshmi Piepzna-Samarasinha) Ableism is intersectional and complex and it will take a lot of time to unpack. I like the garden metaphor for our brain – we can’t always choose what concepts were planted in our minds in the past, it’s not always our fault if weeds flourished when we weren’t looking. However it is our responsibility to take the time to dig out those weeds and to nurture the plants we want to grow. Is weeding out ableism difficult? Yes. Is it sometimes embarrassing to realize what biases have grown in our minds? Yes. Will we spend our entire lives weeding? Probably. But that’s a good thing! When we recognize that we have a lot to learn, that we all are ableist, that this is a never-ending learning process, that is where we find our power to change and our forgiveness for our past self’s ignorance. 

Advocacy is not being silent. Advocacy is having the hard conversations. Advocacy is speaking up about topics that don’t directly affect you in order to take the burden of creating change from those who are directly affected by a policy, institution, or bias. Advocacy is active. Advocacy is continual. Advocacy is humble self-reflection and strives for change.

Related Reading – contains only books I have read, so is not a comprehensive list:  

  • Demystifying Disability: What to know, What to Say, and How to be an Ally by Emily Ladau – A quick easy read
  • Disability Visibility: First-Person Stories from the Twenty-first Century by Alice Wong
  • Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarashinha
  • Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann
  • About Us: Essays from the Disability Series of the New York Times by Jonathan Todd Ross
  • The Boys in the Bunhouse: Servitude and Salvation in the Heartland by Dan Barry
  • Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrier Buck by Adam Cohen
  • What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller
  • Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Normal
  • Disfigured: on Fairy Tales, Disability, and Making Space by Amanda Leduc
  • The Future is Disabled: Prophecies, Love Notes, and Mourning Songs by Leah Lakshi Piepzna-Samarashinha
  • Feminist Queer Crip by Alison Kafer
  • We’re Not Broken: Changing the Autism Conversation, by Eric Garcia

GC and Disability related reading (may contain outdated terms and references):

Instead of using:Consider using:
Typical, normalCommon, often, usual, expected, unaffected
Broken, bad, atypical, mutant, defective, impaired, abnormalNot working, non-working, different, unique, variant, affected
Genetic anomalyGenetic variant
Chromosomal abnormalityChromosome variant, condition, aneuploidy/specific change tested for
Risk of a conditionChance of a condition
Patient admits/deniesReports, Does not report
NoncompliantDescribe barriers in access to care
Low functioning autism, high functioning autism, Asperger’s syndromeAutism without an intellectual disability or history of delays, with history social milestones delays, PDD-NOS, autism spectrum disorder
Addiction, Alcoholic, “drug user”Substance use disorder/alcohol use disorder
Birth defect, malformation, deformationStructural congenital condition, be specific if possible
Mental illness/mentally illMental health condition, be specific if possible
Crippled, impaired, mutantUse specific diagnoses instead
Hearing or vision impairment, impaired hearing or vision, blindHearing loss, hard of hearing, low vision, decreased vision
Caregiver, when referring to parents of disabled adultsParent, personal care assistance provided by their parent for *** activities
Retardation, cognitive impairmentIntellectual disability, global developmental delays
Mute, nonverbalSituation dependent speech, does not verbalize, non-speaking
Handicapped, handicapable, dis/ability, disAbility, differently abledDisabled, with a disability
Special education, special needsDisabled, has an IEP/504 plan, receives additional supports in *** subject areas, support needs **
Disability/handicapped bathroom/parkingAccessible bathroom/parking
Wheelchair bound/confinedWheelchair user, uses mobility aids *list them out

*Many of these are context dependent and so it may be okay to use certain words in certain contexts, some may also be  reclaimed or the preferred term by individuals.

Devin Shuman (she/her) is a genetic counselor at Genetic Support Foundation who has mitochondrial DNA depletion syndrome. On twitter at @DevinShuman.

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by | June 28, 2023 · 12:33 PM

Spinning Disability Into Gold: SMN1 testing and the monetary valuation of life.

by Dan Meadows

Beatrice Adler-Bolton and Artie Vierkant’s debut book Health Communism makes a remarkable case for reimagining the global healthcare landscape. For the genetic counseling field, their case offers an urgently needed approach to patient advocacy.

In 1995, Dr. Judith Melki isolated SMN1, a gene implicated in the rare neurodegenerative condition spinal muscular atrophy (SMA). Dr. Melki also discovered SMN2, an unexpressed near-identical copy of the SMN1 gene that was a promising target for novel therapeutics. Spinraza, the first developed from this discovery, was the product of a collaborative effort financed by orphan drug policies for rare diseases. Consequently, Spinraza was expensive, initially priced at $750,000 for the first year of treatment and $375,000 for subsequent years. The economics of Spinraza’s distribution resulted in slow uptake in both private and universal payer systems, including several national restrictions and one outright denial in its coverage on cost-benefit-grounds. In the interim, two more therapeutics for SMA had been approved: a one-dose gene therapy marketed as Zolgensma that is the single most expensive-per-dose pharmaceutical in the world at $2,125,000, and an oral maintenance medication marketed as Evrysdi that is priced on patient weight with a maximum cost of $340,000 per year.

To quote Nathan Yates, SMA patient and adjunct economics professor at Southern New Hampshire University, “We should not put a price tag on life, though.”

The economic barrier to treatment for patients with SMA speaks to both the wasted utility of pharmacology in personalized medicine and what Beatrice Adler-Bolton and Artie Vierkant call the “vulgar phenomenon” of health in their debut book Health Communism. They argue that how health is defined under capitalism has as much to do with obscuring the architecture of economic systems that underpin it as it does explaining physiological phenomena. In the case of therapeutics for SMA, “personalized” also incorporates an individual’s economic, political, and geographical conditions; in other words, medicine is personalized to a patient’s class, too.

Widely understood as “social determinants of health,” all of the different ways a person’s physiology is shaped by their environment has been naturalized in our healthcare landscape but is not natural. While the World Health Organization (WHO) agrees, stating “this unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon but is the result of a toxic combination of poor social policies, unfair economic arrangements, and bad politics,” authors Adler-Bolton and Vierkant argue the WHO helped to create the very conditions they now declare as being “more important than health care or lifestyle choices in influencing health.” They ague that because logics of finance and actuarial science built the foundation of our global healthcare landscape and have directly shaped institutions like the WHO, these institutions reproduce a value system that reinforces the idea of healthcare as a commodity that is to be sold on the market, even in countries with so-called universal healthcare. Put plainly, the authors argue that because capital is the central social determinant of health, patients around the world are only entitled to the health they can afford.

The authors explain how our global healthcare landscape was made this way with an analysis of the relationship between the many intersecting threads of medicine and economics. Their analysis coalesces arounda theory of healthcare delivery called Extractive Abandonment that functions primarily as financial extraction of the working class and global south. An intersection of Marta Russell’s “money model of disability” and Ruth Wilson Gilmore’s theory of “organized abandonment” in the US prison system, materially Extractive Abandonment simply concentrates wealth among the ruling class. However, sociologically it fuels the production of narratives around the worker/surplus binary – an iteration of the “eugenic debt burden” of the twentieth century – which aim to naturalize it in our culture. In an American context, it is no coincidence that healthcare’s ties to employment are the product of labor bargaining. In the authors’ words:

“The worker/surplus binary solidifies the idea that our lives under capitalism revolve around our work. Our selves, our worthiness, our entire being and right to live revolve around making our labor power available to the ruling class. The political economy demands that we maintain our health to make our labor power fully available, lest we be marked and doomed as surplus. The surplus is then turned into raw fuel to extract profits, through rehabilitation, medicalization, and the financialization of health. This has not only justified organized state abandonment and enforced the poverty of the poor, sick, elderly, working class, and disabled; it has tied the fundamental idea of the safety and survival of humanity to exploitation.”

There is not a single better explanation as to why three SMA therapeutics can be put on the market for preposterous prices, let alone put on the market at all. To put it simply, the authors quote disability scholar Liat Ben-Moshe: “surplus populations are spun into gold.”

But it does not have to be this way. Adler-Bolton and Vierkant show throughout Health Communism that the extractive economic systems that finance modern healthcare delivery are sociologically obscured but not invisible. With some work – which the authors have graciously started for us – it is possible to reveal these systems for what they are. Only then can they be changed.

Revealing one of these systems in particular, US’ Social Security Disability Insurance (SSDI), offers the genetic counseling field an urgently needed approach to patient advocacy. Adler-Bolton and Vierkant describe SSDI as a biocertification regime in which disabled bodies are not “certified” for care, but rather “de-certified” for work. In order to qualify for SSDI, a person’s disability is quantified in monetary terms with respect to a certifiable labor-limiting diagnosis. Known colloquially as “The Blue Book,” the Social Security Administration’s (SSA) medical guide for disability evaluation is the actuarial document that facilitates this biocertification, and much like the social determinants of health, it has been naturalized when it is anything but.

If the pharmaceutical industry’s drug pricing is the “extractive,” this biocertification regime is the “abandonment.” A decades long neoconservative political project has gutted the American welfare state, and another decades long neoliberal political project has plagued policy with the adverse logics of cost-benefit-analysis. What is left is a disaster worsened across the political spectrum, a fact that is the basis of critical disability studies but largely absent in today’s political imaginary.

The authors offer an important caveat about this biocertification regime, however, one that brings to mind the role genetic counselors play in the diagnosis of genetic disease: “Resisting biocertification does not mean resisting “diagnosis” or identification. It means resisting the leveraging of these certifications by capital and the state.”

Those impacted by SMA, for example, are forced to pay astronomical costs or navigate administrative burden whether they are certified for treatment through economic means or their bodies de-certified for work by the state. In either circumstance a genetic test is going to be involved, one that may even incur its own monetary cost.

It is worth noting that these genetic testing options, much like the SMA pharmaceuticals discussed earlier, are miraculous. The ability to accurately identify genetic disease is an invaluable resource and as Adler-Bolton and Vierkant say it should not be resisted. However, genetic testing plays a straightforward role as a prerequisite for therapeutics or care, and is as such complicit in reinforcing the monetary valuation of life.

This says nothing of the quality care provided by the genetic counselor who facilitates the discussion around the ordering of the genetic test, the precision of the biotechnology and bioinformatics that perform it, nor the careful review of the analysts who classify a result. These are integral aspects of our healthcare infrastructure. What it speaks to is how the process is leveraged by the pharmaceutical companies described earlier, and by the state. When aspects of health inequity are described as being “institutionalized,” this is what is meant.

As genetic counselors, we’re often a first touch point for individuals affected by genetic disease, and facilitate triaging to other medical specialties and care resources. What Adler-Bolton and Vierkant make clear in Health Communism is that the priorities of the systems and institutions in this triaging process are extractive in nature. So if our aim as clinicians is to improve the quality of life experienced by individuals affected by genetic disease, then we must first acknowledge these systems for what they are.

While the monetary extraction by the pharmaceutical industry is blatantly obvious, the abandonment by the state is more subtle, and is marked by indifference. It involves significant administrative burden to provide poverty-wage benefits. To explain, let’s look at the SSDI determination for individuals affected by SMA. While according to Social Security Ruling (SSR) 16-4p: Titles II and XVI, “With the sole exception of non-mosaic Down syndrome, genetic test results alone are not sufficient to make a disability determination or decision,” they are central to the determination process. For example, the “Suggested Medical Evidence of Record (MER) for Evaluation” policy for disability determination of someone with SMA is molecular genetic testing of SMA1, a misspelling of the SMN1 gene. It is both baffling to think this misspelling persists through document reviews and infuriating to consider whether it has led to an SMA patient’s SSDI from ever being denied and further administrative burden.

This is the true face of the system genetic counselors can provide to people who are suffering. It is an embarrassment. There is not a single better explanation as to why an SSA document could have such an egregious error than what Adler-Bolton and Vierkant present in Health Communism.

What does this mean? It means as genetic counselors we have work to do, work we were already scheduled for. The Accreditation Counsel for Genetic Counseling (ACGC)’s nineteenth practiced based competency asks that genetic counselors advocate for individuals, families, communities, and the genetic counseling profession. The twenty second practice-based competency asks that genetic counselors recognize their role in the larger healthcare system.

Our field has a serious problem, and it is about time we recognize it. One way we can start is by asking hard questions. Here is one that I have: How does an emphasis on patient choice regarding testing – an aspect of the genetic counseling delivery model built around the medical ethical principle of autonomy to create distance from a eugenic past – reinforce the logic of healthcare as a commodity to be sold in the private market?

Dan Meadows is a genetic counselor and competitive cyclist based out of Fort Collins, Colorado. He can be reached at danmeadows@pm.me

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by | June 21, 2023 · 9:57 AM

Dangerous “Allyship”: Capitalizing on others’ oppression

by Kimberly Zayhowski, Helen Kim, and Liann Jimmons

            As we are reminded by the National Society of Genetic Counselors’ Professional Status Survey each year, the genetic counseling field remains notoriously homogenous. With the Black Lives Matter and Stop Asian Hate movements and a growing consciousness of social justice matters, many with privileged identities are coming to appreciate the extent of oppression such as racism, sexism, ableism, transphobia and homophobia in our society. A focus on diversity, equity, inclusion, and justice (DEIJ) has been highlighted in NSGC’s initiatives in recent years. This surge in DEIJ work gives us optimism. At the same time, it’s important that allies are diligent at monitoring their own motivations to not become opportunistic “allies” who capitalize on DEIJ work to bolster their social capital and CVs. In many spaces, false allies are proceeding with DEIJ work as a grant-funded trend while actually harming the communities they are supposed to be serving. When people focus their effort into having others view them as “allies,” they may obscure their complicity. In this piece, we outline some of these problems and offer an opportunity for constructive reflection so that we can all work towards something genuine.

“Equity tourists”: Boosting resumes, harming communities

Nascent in their journeys in DEIJ, there are a number of ways well-meaning allies contribute to the erasure of community members. DEIJ work can be another way white, non-disabled, straight, and/or cisgender folks colonize marginalized spaces. Columbusing behavior, or “discovering” something that is not new, is a symptom of internalized white supremacy. Even if someone has “found” new knowledge about a marginalized community, that fascination can easily turn into fetishization. Without the context and rigor of lived experience, the understanding of these social dynamics can only remain superficial. Work that lingers at contemplation, theorization for the sake of it, and reiteration of known problems without real solutions remains ineffective. With this, non-community members become viewed as “experts” and hold authority on topics on which they only have an academic understanding. It leads to the hoarding of diversity-related positions or projects and gaining visibility, recognition, and financial compensation for said work. Academic work without community involvement or benefit becomes a means to an end, another way of objectifying minoritized people’s struggles. Internalized white supremacy is insidious in nature and requires constant checks and balances. Power is being siphoned away from minoritized scholars in their own communities as opportunities are lost to outsiders who have better connections and systemic privilege.

Communities need respect and dignity, not “allies” who profit off of their oppression. While non-community members may be well-meaning and spurred by their new understanding of racism, transphobia, ableism, and/or homophobia, pursuing work in these areas without the leadership of marginalized community members can become disingenuous and opportunistic. For example, one survey found that ~76% of chief diversity officers are white, while ~4% are Black, ~8% are Latino or Hispanic, and ~8% are Asian. Organizations continue to hire workers who have little or no experience to execute DEIJ missions. Putting non-community members in positions of power related to diversity work is underhanded and waters down what work can actually be done. Without community engagement, even the most well-intended non-community member will miss key information and insight that is pertinent to drive change.

Proximity does not equal identity. Authorship does not equal embodiment. It is imperative that allies who are working in DEIJ spaces cite, partner with, and support scholars from minoritized communities to take the lead on DEIJ initiatives. It is both true that allies can do meaningful DEIJ work AND that we need to be critical when leaders in these spaces are promoting themselves as experts on identities and experiences that are not theirs.

The difference between supporting and exploiting

The people who receive the most publicity are often those with the loudest voices, but they are not always the necessary voices. It can be easy to make the excuse that you cannot find a community member to lead an effort. However, if you are truly invested in making a difference and supporting historically marginalized communities, you need to put more effort into finding a voice to amplify louder than your own. People with privileged identities need to step up in ways that uplift not overtake. It is true that allies have opened doors in meaningful, necessary ways, but it’s imperative that we all recognize when to transfer the power back. Open the door and hold it open for someone else to walk through.

So where is the line? How do we recruit without tokenizing, how do we include without exploiting, and how do we take action without colonizing opportunities? Some critical questions for allies who aim to empower (not overpower) minoritized communities to consider when engaging with DEIJ work:

Presentations: Are you the right person to give this presentation? Do you know of a community member you can recommend for the presentation instead? Can you advocate for pay for DEIJ-related presentations? If you take on a presentation, should you bring in a co-presenter? Are you in a position where you could mentor someone with needed perspectives who has less presentation experience?

Research: How do you position yourself in relation to the research question? How do your identities impact decisions made throughout the project? Are the goals of the project in line with community-expressed needs? Do you have diversity on your team, including folks with lived experiences relevant to the project? Are your community consultants worthy of authorships instead of acknowledgments?

Leadership roles: Are you the best person for this position? Is your perspective already represented in this space? Is the selection process inclusive? Can you use your privilege to elevate another candidate instead and support the project or institution in an alternate way?

Overall: Take some time to understand all of your incentives and motivations behind doing this work. Share them with friends, colleagues, and mentors you trust to tell you when you’re in the wrong. Find opportunities to be vulnerable and solicit feedback. Spend a lot of time in this phase of your work before jumping in recklessly. Be in community with folks able to give you iterative feedback and commit to this process. Are there other perspectives you should be bringing in? Is your work transactional? What are your intentions? Are you only involved in anti-oppression work that results in additions to your CV? Do your intentions align with the impact? Is your work being done to drive change or just to make you feel better about yourself?

All in all, while allies must do the legwork on tackling DEIJ issues, we emphasize leg. While minoritized folks should lead changes that affect their communities, they cannot continue to shoulder the entire weight of this work by themselves. Whenever possible, community members must be at the head of the efforts, and allies need to examine how they can redistribute their power. We highlight the needs for collaboration with community members and accountability at all levels to ensure that our actions and impact are in line with our intentions. As individuals, institutions, and systems, we need to scrutinize the impact of our actions on communities, develop our awareness to see beyond ourselves, and dedicate ourselves to doing better.

Note: This is a call to engage in honest self-reflection about our motivations as individuals, not a call to persecute our colleagues. We feel strongly that people should not have to publicly disclose personal aspects of their identities while doing DEIJ-related work. We also recognize many identities are fluid and can change over time. Engaging in DEIJ work requires us to honor the trust that our colleagues give to us. 

Authors

Kimberly Zayhowski, MS, CGC (she/her) works as an assistant professor and research genetic counselor in Boston, MA. Her views are informed by her queer and multiracial identities.

Helen Kim, MA, MS, CGC (she/her) is a chronically ill and queer genetic counselor. She is an educator and public engagement associate working to foster conversations around ethical and societal implications of genetic technologies with minoritized communities in Los Angeles, CA.

Liann Jimmons, MS, CGC (she/they) is a genetic counselor and, more importantly, an advocate for genomic justice. She works in public health doing outreach, education, and clinical services for underserved communities in Honolulu, HI.

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by | June 14, 2023 · 12:14 PM

Guest Post: Polygenic Scores: A Demand To Laboratories For Greater Transparency, Validation, and Inclusivity

Polygenic scores (PGS), sometimes referred to as polygenic risk scores (PRS), are a developing risk estimate tool used to determine personalized risk for complex conditions that are influenced by both genetics and environment, such as breast cancer. Historically, utilization of PGS in genetic testing has been discriminatory and inequitable across various ancestries, which likely exacerbates racial inequities. While genetic ancestry is biologically based, it can correlate with race (a social construct); therefore, inequities in ancestry-based data add to racial health care disparities. Until 2021, PGS for breast cancer was only available to cisgender women of self-reported European ancestry due to a lack of sufficient GWAS data to identify relevant SNPs among other populations. Events of 2020, including the murder of George Floyd, sparked the country’s short-term widespread awareness of, and engagement in, addressing racial inequality. The country’s reaction, combined with increasing pressure from many individuals in the genetics field concerning the racial inequality of PGS, resulted in some changes in reporting practices of PGS. Laboratories who previously offered this testing updated their test menus; some removed PGS testing, while other laboratories released updated versions. 

Despite modifications, it has been demonstrated that PGS are still not equitable across ancestries. As genetics providers, we require transparency in marketing materials, equal discriminatory power across all populations, and demonstration by genetic testing laboratories of true commitment to reduction of healthcare disparities before use of PGS can be considered equitable and able to be used across ancestries. 

 In November of 2022, Hughes et al. published an updated PGS for breast cancer they call “multiple-ancestry polygenic risk score” or “MA-PRS”. The authors developed a breast cancer risk assessment with greater accuracy for cisgender women of non-European ancestry by adjusting the weight given to each single nucleotide polymorphism (SNP). This MA-PRS uses 56 ancestry-informative SNP markers to determine the patient’s proportion of African, East Asian, and European ancestry. It then weighs the 92 previously identified breast cancer-associated SNPs based on the relative proportion of each ancestry. 

While we acknowledge that this methodology does improve the performance of PGS in the non-European population, MA-PRS still does not perform equally across ancestral populations and therefore remains discriminatory. In particular, based on Table 2 of Hughes et al., MA-PRS does not delineate between low and high-risk scores as well for individuals who are Black/African as compared to the other ancestral categories studied. Furthermore, utilizing only three SNP-informed ancestral categories likely fails to represent many Americans. 

The National Society of Genetic Counselors (NSGC) and Wand et al. have recently published a Practice Resource on PGS which argues that “equitable access to polygenic scores is threatened by differential test performance across populations, differential capacities to support population-wide delivery of genetic services, and differential resources for [PGS] education or uptake of information in a population.” Similarly, there is a new statement on clinical application of PGS published by The American College of Medical Genetics and Genomics (ACMG) and Abu-El-Haija et al., which includes the need to “improve available data sets for populations with non-European ancestry and optimize analytic methods [of PGS] so that genomic risk can be accurately and equitably identified across all human populations.” While the MA-PRS attempts to ameliorate some of these disparities, we argue that significant barriers to equal access remain.

In addition to these concerns regarding equity and access barriers related to the MA-PRS, there remains a significant question regarding the clinical utility of PGS. Currently, the National Comprehensive Cancer Network (NCCN) guidelines expressly counsel against using PGS results for clinical decision-making due to a lack of proven clinical validity. Therefore, insurance coverage for any medical management based on an elevated PGS score is highly in question. Similarly, the NSGC Practice Resource states, “clinical utility of [PGS] remains largely hypothetical, with increasing research evaluating clinical outcomes.” Furthermore, “genetic counseling about [PGS] should be framed in the broader context….[PGS] often does not capture all genetic risk.”  

Considering the remaining disparity in clinical validity among populations, the complexity of PGS results interpretation, the lack of demonstrated clinical utility, and the potential lack of insurance coverage, we argue that significant work from the genetics community is still needed in order for PGS to truly be equitable and clinically useful. We acknowledge that MA-PRS are a first step towards that goal, but additional improvements need to continue. 

As laboratories continue to improve or develop PGS, we ask for the following:

  1. Transparency by genetic testing laboratories offering PGS.
  • Is this PGS performing equitably across ancestries? If marketed towards diverse patient use but without actual equal performance this could be misleading at best, and potentially harmful to patients at worst.
    • Is there clinical utility currently for this PGS? Providers should not be told that PGS will help with clinical management and qualifying for high-risk cancer screenings so long as NCCN and other governing bodies recommend against such.
  • Validation and equal power across all populations.
  • Who can use this PGS? Given the development of PGS for use in non-European populations, there should not be movement backward. All future PGS options should be available and validated in diverse populations.
    • How well does this PGS perform in diverse populations? There should be equal power and validation across all ancestral groups; it should not perform better or worse for one group over another. 
  • Demonstration of true commitment to inclusion and equity for patients by addressing underlying barriers. 
  • What research and data is this PGS based on? Eighty-four percent  of GWAS participants in cancer risk studies are of European ancestry. This GWAS data has been the foundation of all genetic testing (including PGS). We encourage researchers to foster a culture of transparency and trust with underrepresented populations with goals of obtaining ancestrally diverse representative data. Therefore, allowing for development of wholly new PGS and mitigating the need to reanalyze the currently available and ancestrally limited data.
    • What relationships are involved? Who are the collaborators? Bias exists in many areas of medicine; limiting that bias should be done whenever possible. Collaboration with and funding for groups specifically focused on diverse experiences, such as patient advisory boards and community-based participatory research projects, should be prioritized. 
    • How are other barriers or health disparities being addressed by laboratories offering PGS? Health disparities in genetics, such as access to genetic counselors or germline testing and higher rates of variants of uncertain significance for patients who are from underrepresented populations, already exist. As mentioned, although race is a social construct, disparities of testing and healthcare based on ancestry further exacerbate racial inequities. True commitment to inclusion and equity does not stop at PGS. Rather, it is necessary to address across all areas of genetics and throughout other health care specialties.

If you agree, join us and please sign this petition to register your support for transparency, validation across populations, and true commitment to inclusion and equity from PGS producing laboratories. These are the opinions of the individuals listed below, and not their institutions. 

[alphabetical order] 

Fatima Amir, MS, CGC

Suzy Cahn, MMSc, CGC

Tiffiney Carter, MS, CGC

Hayley Cassingham, MS, CGC

Katie Church, MS, CGC

Jeanne Devine, MS, CGC

Jennifer Eichmeyer, MS, CGC

Lauren Gima, MS, CGC

Helen Kim, MA, MS, CGC

Katie Lang, MS, CGC

Heewon Lee, MS, CGC

Kelsie McVeety, MS, LCGC

Jessica Scott, MS, CGC

Stephanie Spaulding, MGC, CGC

Melissa Truelson, MS, LCGC

Natalie Vriesen, MS, CGC

Kristin Zelley, MS, LCGC

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by | June 6, 2023 · 9:33 AM

Eulogy for a clinic

by Jehannine Austin

My professional life up till this point has been centered around a mission to bring genetic counseling to people who – like me – live with psychiatric conditions, and their families. This has been my mission for >20 years, since my family started asking me about whether psychiatric conditions were genetic and what this meant for us while I was doing my PhD on this topic. Realizing that it wasn’t just my family that had these questions and that no-one was really addressing them is what drove me to train as a genetic counselor. Once I completed my genetic counseling training in 2003, no one would hire me to provide genetic counseling for families with psychiatric conditions. Of course, psychiatric conditions have always been profoundly disenfranchised in terms of health services, but as well, there was no evidence that people with psychiatric conditions wanted genetic counseling, and no evidence that it could help. So, this drove me into research. 

I landed a research professorship and my team and I generated data showing that: 

  1. people with psychiatric conditions wanted access to genetic counseling 
  2. genetic counseling helps people with psychiatric conditions 

In 2012, on the strength of these data, we established the Adapt clinic – the world’s first specialist psychiatric genetic counseling clinic. It was all about helping people understand the factors that contribute to developing a psychiatric condition, and how to use this understanding to engage in self-management strategies to protect their mental health for the future. It was about helping people to make meaning, and understand that psychiatric illness is not your fault, and not your fate. 

In 2023, after 11 years of helping patients, training students, generating research data about the impact of what we do, and providing a model for psychiatric genetic counseling services around the world, our service is being closed.

I’ve fought this with everything I have because it feels so wrong. But I’m so bone tired …and there’s literally nothing more I can do. It’s over.

No amount of data demonstrating the awesome outcomes that patients experience (increases in empowerment, changes in behavior to engage in self-management strategies to protect their mental health) after receiving our services has swayed the decision. So, this is a eulogy.

The webpage for the clinic has silently ceased to exist. 

The reason given for the death of the Adapt clinic? To redeploy the counselors to provide service for general genetics patients because the waitlist there is so long. It’s apparently that simple. And pointing out that this is classic disenfranchisement of people with psychiatric conditions – again, people like me – has made no impact. I may as well be speaking to a wall. 

Now, as someone who has served as a leader myself in a publicly funded healthcare setting, I do of course understand that we are forced to make decisions about how to allocate scant resources. And sometimes people might not like the choices we make. I understand that. My objection is that the Adapt clinic embodies (has embodied) all of the principles and values claimed to be held dear by the healthcare system that is closing it. That is what I find distressing.

Initially, when I saw the writing on the wall that the clinic would be closed, I was devastated- this was my life’s work, I thought. And it’s been for nothing, my internal voice said…I am a failure. I lost all energy to continue in my efforts to leave things better in the world than I had found them. Because, what is the point? I – and the counselors within it – gave the Adapt clinic everything we had, it was demonstrably successful, and yet it is still being closed….it felt like it was all for nothing.

But this narrative is wrong. I can see that I am not a failure, and that the clinic was not a failure. Instead, the clinic, and the counselors within it, and the patients we serve, have all been failed by the system we are in. 

Our efforts were not for nothing. The Adapt clinic has helped about 1400 patients and trained over 50 students, some focused on clinical skills, some focused on research skills, and some both. We published about 20 papers that are out there in the world that explain the difference that psychiatric genetic counseling can make for people, and how to do it well. I know that we have inspired practicing genetic counselors around the world as well as students…we have inspired people to train in this discipline. I know this because people have been gracious enough to tell me about how our work has affected them.

Given all this, you have to ask, why is the clinic dead?  I think there are two real answers to that. First, psychiatric conditions are still so stigmatized. People with mental illness – like me – have a long and awful history of being disenfranchised, and here we see it again: an evidence-based service for people with psychiatric conditions cut, despite data showing that it’s needed and it helps. And yet it’s cut so that we can prioritize providing services for people with non-psychiatric indications. 

Second, the genetic counseling services we provide for people with psychiatric conditions typically don’t involve genetic testing. And though the service helps people, the health system decision-makers don’t value genetic counseling when there’s no genetic testing being done. The psychotherapeutic work we do is not valued …which is truly the hardest thing for me to swallow, because data show that it’s exactly this that makes the difference even when genetic testing *is* available. It’s the counseling that helps people. 

So, yes, this is a eulogy — a public expression of pain and grief and disillusionment about the death of a clinic whose establishment was the culmination of >10 years of my work, that we nurtured successfully for 11 years, and that brought purpose to my life and a way to channel my own experience of psychiatric illness to help others. It’s so hard to build and create something new and innovative, and so very easy to destroy it. It does feel like a death. 

My biggest fear is that others will stop trying to establish psychiatric genetic counseling clinics in other jurisdictions as a result of this. People – like me- who have psychiatric conditions deserve better than this. So please keep pushing. Others have taken up the mantle – there’s a clinic in Cardiff, and Tennessee, and others (if you know of others, please tell me!)… I’m rooting for all of you. Please let me know how I can help. 

But I think this reflects broader issues too – I think as a profession, we have to answer some questions for ourselves. Are we happy with being reduced to roles as the purveyors of genetic testing? And only post-test counseling at that? This is the direction in which we are headed. Medical genetics departments with long and growing waitlists often respond by simply reducing the list of indications to make fewer people eligible to access genetics services.  That’s exactly what happened to the Adapt clinic — the eligibility criteria for access to genetics services shrank to exclude our patients. What happens to these patients? It’s not that they get service elsewhere – they don’t. The people who make these decisions are deciding who gets care — deciding who matters. This is an issue that relates to equity and justice. 

In writing this eulogy for the clinic that I created and loved, my purpose is to try to use its death for something positive. Given our increasing focus on the importance of EDI issues, I would like to suggest that this is an opportunity to question whether tertiary-care clinical genetics is the right location for genetic counselors if we are to be able to provide just and equitable access to our services for people who need them. Situating genetic counseling services in alternative locations, such as primary care/family practice, might be worth considering as a way to ensure our ability to practice to the top of our scope, to offer more than just genetic testing (like psychiatric genetic counseling), and to ensure more equitable access for patients. 

I hope that the end of Adapt can be used as an impetus for the start of something new. If the Adapt clinic has impacted you in some way, those of us who nurtured it would love to hear about it in the replies, or by message. 

Some of my fave quotes from people who had psychiatric genetic counseling in the Adapt clinic (from Semaka et al 2019):

“Until genetic counseling, no one ever coherently explained to me why I have a mental illness. And I think that’s a conversation that needs to be had because most people just think they’re having a bad time of it or they just think that they just need to try harder”

“I felt in control, you know [psychiatric genetic counseling] made me feel more empowered than I did when I walked in and I think for me that’s a big deal… I just felt after the appointment I had more tools to control my life.”

“[Psychiatric genetic counseling] gets rid of some of the shame…. with mental illness, it’s so hard to know what you did wrong but really you didn’t do anything wrong and [psychiatric genetic counseling] just explains that to you… so you’re able to look at this and think, ‘OK, this isn’t my fault’”. 

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by | March 28, 2023 · 6:24 PM

I Can’t Unsee Jar Jar Binks in the NSGC’s DEIJ Presence

by Justin Lorentz

Justin Lorentz is a certified genetic counselor who graduated from McGill University in 2012. He spent 8 years working in cancer genetics at Sunnybrook Hospital in Toronto, Canada where he developed an academic interest in prostate cancer genetics. He now works at Sunnybrook one day a week leading their Familial Prostate Cancer Clinic. Justin spends the rest of his time at Medcan, a Canadian preventive healthcare clinic offering proactive genetic testing, pharmacogenomic testing, carrier screening, NIPT, and healthy whole genome sequencing.

Two years ago, I saw the NSGC rebrand a pillar acronym for DEI initiatives into a pillar franchise: Star Wars, and more specifically, their JEDI. This was at a time when J for Justice was starting to be included in many Diversity, Equity, and Inclusion (DEI) committees. Most committees threw the J on the end. The NSGC did not, and on April 8th, 2021, the NSGC released an introduction to the J.E.D.I. Committee. The potential of the Star Wars franchise reference to trivialize the efforts of the committee was brought up in the publication, but the post argued JEDI is easier to say and through “listening and conversation with others” a vote was struck up with the committee to settle on their name: the J.E.D.I Committee.

And the NSGC was not alone. The American Association of Geographers, Big Brothers and Big Sisters of America, heck, The Canadian Psychological Association all have a JEDI, and many JEDI committees lean into it, lightsabers, and all.

But something about the J.E.D.I. acronym never sat right with me. I remember thinking, imagine if the letters DEIJ magically spelled out MUGGLE, and the NSGC’s DEIJ committee adopted the M.U.G.G.L.E acronym instead. What would happen to that committee’s name after J.K. Rowling would go on to make her TERFY statements on trans women? Rebranding DEIJ to a franchise is risky because you have no control over how that franchise’s brand can evolve. It’s begging for a PR problem. But even more so, what do Harry Potter and Muggles have to do with DEIJ or genetic counseling? If the answer is nothing, then the risk of rebranding DEIJ into something it isn’t is not worth it to me.

Over the years of seeing the J.E.D.I. acronym on NSGC updates in my Gmail inbox and on Twitter, my thoughts on the J.E.D.I. acronym for a DEIJ initiative started maturing. I debated whether my issues were worth publicly expressing until I came across this Scientific American article which summed up my growing concerns, and more. 

After dwelling long enough I decided my need to express my opinion more loudly. I agree with the NSGC DEIJ Committee’s initial instincts that the J.E.D.I. acronym does trivialize the DEIJ Committee, but to me that just scratches the surface. When you dig but a little deeper, you realize that JEDI has its own meaning, a controversial history, and a diehard fan base. It not only distracts from DEIJ work, but I think the word JEDI opposes DEIJ work, not just for our professional organization, but for any organization.

There’s a lot to think about and you need to know about the Star Wars franchise to really put it all together. I realized this as I ran this DNA Exchange blog post by my partner, who has never seen media from the Star Wars franchise. Although it’s probably safe to assume most people attuned to Western culture know what a Jedi is, the more you learn about Jedi and their Order, the more problematic it all becomes as the title for any DEIJ work.

In case you’re someone who does not feel included in my previous assumption that most folks know what a Jedi is, let me sample Merriam-Webster to do the definition justice, so we’re on an equal playing field. *Nerd mode activated* Jedi are a very select group of monk-like galactic warrior/priests, both humans (the historic stars are white cis-gender males) and alien (Yoda), who are proficient with melee weapons called lightsabers. They’re all born with a seemingly inherited wealth of abilities including accessing and manipulating a spiritual/cosmic energy called The Force to perform supernatural feats like levitation and the famous Jedi mind trick (Eek! There’s NSGC J.E.D.I. Action Plan Task Force – How many other communications from the J.E.D.I. committee could/have become unintentionally conflated with trivializing aspects of the Star Wars franchise?).

Jediism, like Scientology, has made its way from the sci-fi world into the real world. In 2005 the Temple of the Jedi Order was registered in Texas and was granted federal income tax exemption by the IRS in 2015. The Church of Jediism purportedly boasts up to 500,000 members worldwide. Although faith is an important part of a patient’s values and decision making, the genetic counseling profession is not aligned or defined by any one faith, especially not this one. It’s a bit out there, but the NSGC’s J.E.D.I. Committee is sharing a brand with Jediism, even if it is in name only. 

Let’s explore the idea of a PR problem further – what happens when the Star Wars franchise comes under scrutiny? More importantly, what if the scrutiny is DEIJ related? 

Law and Philosophy professor Patricia Williams wrote a very compelling article called Racial Ventriloquism in 1999 after Episode I: The Phantom Menace came out. Here she highlights racist depictions of two alien characters from the Star Wars franchise: one popular, one more forgettable (until now).

Exhibit A) Jar Jar Binks: He’s a Gungan, an amphibious alien species with a frog-like face. He’s portrayed a little less clever than the average alien, panicky, having poor judgement, and being clumsy. He is the main source of comic relief and he and his species share a characteristic jovial, swaying saunter complete with a striking West African, Caribbean, and African American linguistic style. Patricia quotes a few phrases here to jog your memory if you haven’t heard him talk in a while: “You-sa Jedi not all you-sa cracked up to be.” “Me berry berry scay-yud.” “We-sa goin in da wah-tah, okeyday?”. 

Exhibit B) Watto: He’s a Toydarian, a potbellied alien with insect like wings and a large nose like a tapir. He’s portrayed as a money-obsessed junk dealer and slaver. His accent seems Middle Eastern, and Patricia notes he bears eerie resemblance in shape and clothing to a cartoon published in Austria’s antisemitic Kikeriki magazine, right down to the hat.

These are two examples of many controversial aspects of the Star Wars franchise brought up over the twenty-four years since the release of Star Wars: Episode I – The Phantom Menace. Admittedly I forgot aspects of these controversies and it took researching them to realize the incredible depth of the problem. I’ll be honest, I wouldn’t expect anyone to be digging into the racial allusions the Star Wars franchise had made over 20 years ago when considering using J.E.D.I. in 2021, but now that we’re here I think we can all agree it’s hard to unsee.

And what about now? It’s not only the Star Wars franchise that’s racially controversial, but also some of its fanbase. Take the more recent racist backlash of Star Wars fans when the now Disney+ owned Star Wars franchise introduced Moses Ingram, a Black female Sith-like antagonist in the Obi-Wan Kenobi series released last year in 2022. Unfortunately, she’s not alone; other actors have faced similar racist attacks:

  • Ahmed Best (Black actor who played Jar Jar Binks) that was so persistent he contemplated suicide
  • Kelly Marie Tran (Asian actor who played Rose Tico) in The Last Jedi and The Rise of Skywalker
  • John Adedayo Bamidele Adegboyega (Black actor who played Finn) in The Force Awakens, The Last Jedi, and The Rise of Skywalker.

It’s debatable whether this reflects poorly on the Star Wars franchise per se, but what it does show is the franchise attracted fans who expect something of the franchise, fans who have their own preconceived beliefs of what they want lead characters in this Jedi series to look like.

How are we feeling after all of this? What are you thinking about right now? Are you seeing the word Jedi through a different lens?

I am.

For me, Jedi, and the Star Wars franchise that birthed Jedi, do not have a place in any DEIJ committee due to Star Wars’ bizarre religious movement, racial controversies, and certain members of their fanbase with strong opinions on the diverse direction the franchise is trying to tale. The word Jedi carries a lot of its own baggage and its own meaning.

To me, DEIJ means what it is: Diversity, Equity, Inclusion, Justice. It may not be easy to say, but neither is 2SLGBTQ+, and neither is challenging our own internal biases ingrained in us from a society built on systemic racism, sexism, ableism, and other injustices. Let’s keep DEIJ as its own important and well-established brand.

The initial reasoning for the NSGC DEIJ Committee to be called J.E.D.I. was fair for that time, and the NSGC’s newly forming DEI committee was not alone in their thought process. Knowing more at this time, I don’t think the NSGC’s J.E.D.I. Committee should continue calling itself something it isn’t. I hope the work of any DEIJ committee is nothing like the work of the Star Wars franchise or their Jedi. In fact, I feel Jedi go against DEIJ committee work. I want to see every DEIJ Committee for what it is, a hard to say acronym, making hard to do changes in what I think is one of the most important areas of development in our profession over the next few years. I think it’s time for a rebrand.

These are my thoughts – I’m interested to hear yours.

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by | November 1, 2022 · 1:19 PM

Guest Post: Prison Abolition 101 (For Genetic Counselors) by Cassandra Barrett, PhD, CGC; Artwork by Mike Nickles

 

 

About the author: Cassandra Barrett graduated from the University of Utah graduate program in genetic counseling in 2021. She holds a Ph.D. in biological engineering and specializes in neurogenetics, variant classification, and precision medicine. She has been involved with prison organizing and education since 2017 and is currently an organizer with Liberation Lit in the Kansas City area. She can be reached at cas9bar@gmail.com

About the artist: Mike Nickles is an artist and writer from Hillsboro, Kansas. He is currently incarcerated in the Lansing Correctional Facility. Mike shares his work with the hope that more people will know the truth about the realities of incarceration and be moved to action. You can follow and connect with Mike on his new Instagram page where he shares his art and writing @inside_out_mike.

People in prison are not a group we think about much when it comes to J.E.D.I initiatives in genetic counseling. What do prisons even have to do with genetics? I have been involved in prison organizing and education for about six years now. As I have learned over time from my mentors and friends on the inside – mass incarceration impacts everything, everywhere, all the time. And that includes genetic counseling.

My hope in writing here is to get more genetic counselors thinking about the impacts the prison industrial complex has on our patients, our profession, and our own lives. So, in the spirit of subversion, I want to share some of the effects I have seen; I’m sure there are many more interfaces between the prison system and genetic counseling that I have yet to think of. I will add a disclaimer that I have never been incarcerated, nor have I had any close family who has been incarcerated.

The first and most simple connection is that (formerly) incarcerated people are our patients. In fact, they are quite likely to be people who could benefit from genetic counseling. Individuals with disabilities are massively over-represented in the prison population. In many cases people are incarcerated as a function of ableism, whether that’s a person with a neurological condition such as Huntington’s disease being arrested secondary to their symptoms, a Deaf or nonverbal person being unable to communicate with poorly trained police, or a person with disabilities being forced into poverty and therefore more contact with police. It goes without saying that BIPOC Deaf and disabled people face the greatest risk here. The overturning of Roe v. Wade has also expanded the risk of incarceration for pregnant people and their providers.

When I started my master’s program in genetic counseling I had already been involved for a while in prison education, teaching Biology 101 on a volunteer basis. I was excited to learn more about genetic counseling practices and competencies specific to counseling incarcerated patients. I quickly realized there would be no such resources forthcoming. Despite the fact that we all counsel folks who have experienced incarceration, there is next to no discussion of the needs of this population within our profession. I have only ever found a single role play and one wonderful master’s thesis relating to genetic counseling for incarcerated women (if you know of any more resources, send them my way!). In a country where over 600,000 people go to prison annually, this is an important area of cultural competency to be trained in. As a majority white cis female profession, I suspect that most of us have never considered ourselves to be at risk of incarceration. In fact, many of us may feel that we benefit from prisons. These days my prison organizing work is centered on mutual learning and relationship building, rather than teaching.

I want to be cautious about advocating that genetic counselors invest time in building out cultural competency toolkits, research projects, roleplays, courses, etc. around incarceration. While these are important things to do and should be done, I instead hope that we will focus more of our efforts on ending mass incarceration and build systems of true accountability and restorative justice. The actions of the prison system itself speak loudly in favor of its own abolition. Learning about the realities of daily life for people in prison is an important way to inform our counseling and our politics. But prisons are intended to be cut off from the rest of the world. They are often built in rural communities. It’s hard to get information in and out of a prison. I have come to see this as an intentional part of their construction. If more of us knew about the realities of prison life, it would be much more difficult to justify their continued existence. I hope that this is just a starting point that will lead any readers to seek the firsthand accounts of people most impacted by incarceration. A reading list with some good places to start is provided at the end. And I want to share with you a few things I have heard repeatedly from my incarcerated pen pals, students, and co-organizers and that have been published in peer reviewed studies of prison life. I hope you will take time to digest these stories, consider the questions they raise, and ask your own.

❖ Prison wages are shockingly low. The average national wage is 63 cents per hour. In some states, work is unpaid. In Louisiana for example, many incarcerated people still pick cotton for as little as 2 cents per hour. Many people in state prisons work to keep the prison running, support state institutions, or are contracted out by the prison as laborers. I’ve known people who built furniture for the university where I got my master’s in genetic counseling, printed flyers for the state department of health, took customer service calls for the state DMV, or made debt collection calls for private companies. Private prisons are by no means the only institutions benefitting from exploitative practices. In what ways might your institution benefit from this type of exploitation? How is your patient with an incarcerated parent going to afford genetic testing given such wages?

❖ Costs in prison are shockingly high. It will cost someone in prison 25 cents to send a character-limited e-message to a loved one and just as much for the loved one to message them back. Imagine spending a quarter for every text you send in a day. Communication services in prison are big money. Adding money to an account to make calls or for someone to buy toiletries at the commissary (a small convenience store inside the prison) will be coupled with massive “service fees”- think Ticketmaster x10. Commissary prices are massively inflated. During this summer’s heat wave, the cost of a small fan in the Kansas prisons where I live was $44 or 440 hours of work with the state wage here. By the time folks can afford a fan, it will already be winter. Prisons make big money for their contracted vendors. Does your company’s retirement investment portfolio include any prison vendors? How much money is it going to cost your patient to call their incarcerated family member for more family health history information?

❖ Prison is disgusting. One of my pen pals in Oregon asked me to tell everyone I know that he was recently served a cockroach floating in syrup for breakfast. Their kitchen has a rat infestation. In some places, shared toilets are only flushable a few times per day. You go until it is full because you and the dozens of other people on your bunk can only flush four times per day. You have to buy soap, menstrual products, deodorant, etc. out of your own pocket at high commissary costs. Not all your bunk mates will be able to afford this. With no A/C on in your dormitory, the smell alone will keep you awake all night. Lack of proper climate control is a common issue across prisons leading to mold infestations and heat/cold related deaths and illness. Is this the type of environment you would recommend for your patients? How might you feel and behave in such an environment?

❖ Prisons are cruel. Suicide watch involves being locked in a cell all by yourself with the lights on 24/7, naked except for a heavy “anti-suicide smock.” People in prison are routinely denied healthcare and may have their diagnoses withheld from them. I have had students in prison who were denied x-rays for broken bones and who were not told they had terminal cancer. Sexual assaults both by other incarcerated people and the staff meant to guard them are commonplace. Like on the outside, Deaf people and those with disabilities are disproportionately targeted. HEARD, a cross disability abolitionist organization, estimates that some 80% of Deaf people in prison are raped while incarcerated. If you are sexually assaulted and require an abortion, you will have to pay for it yourself in 16 states, if you are even allowed access to the procedure by staff. The average cost is over $500, or 793 hours of work for the average incarcerated person (although people incarcerated in women’s prisons tend to earn less than those in men’s prisons, just like on the outside). If you give birth instead, you may be shackled during the process and likely will not be allowed to hold your own baby once they are born. How do genetic counselors put patients into contact with the carceral system through mandatory reporting, documentation of medical procedures, etc.? What screening procedures, medical diets, mobility aids, genetic information, etc. are people in prison being barred from?

These stories are commonplace and routine. They do not represent failures of the system but are rather purposeful features of it. As genetic counselors we know that individual genetic conditions may be rare, but as a whole they are common. They too affect us all. Discussions about ending incarceration belong in genetic counseling because we are all impacted. I hope we can begin to equip ourselves to have those conversations through education and relationship building. I look forward to hearing what questions come up within our community and how they may shape our practice moving forward. It’s a long road, but it’s time to get started on down the path.

Resources

Pen pal programs are incredibly important! Isolation in prisons is a serious issue. For those of us on the outside, building relationships with people on the inside is essential if we are committed to this work. My pen pals are some of the coolest people I know and writing letters is a simple way to get involved. There are many organizations that run pen pal programs including Black and Pink, Liberation Lit, and Abolition Apostles.

The Visiting Room Project is a collection of stories about the realities of life without parole in Angola State Prison in Louisiana, a place with the highest concentration of individuals serving life sentences in the world.

Ear Hustle is a podcast about “the daily realities of life inside prison shared by those living it, and stories from the outside, post-incarceration.”

Resisting Invisibility is a blog published by Liberation Lit, a group of readers both inside and outside of prisons working to build a better world without cages. For full transparency, I am an organizer with Liberation Lit.

Mariame Kaba, Dean Spade, Victoria Law, and adrienne maree brown are just a few important, accessible organizers and authors whose work is incredible and essential. They have been a part of exciting initiatives including the NYC Transformative Justice Hub and Project NIA that provide resources to begin tackling difficult questions about prison abolition (If not prisons, then what? What about the rapists, the murders? How do we keep ourselves safe?). Check out their work and any/all publications by these authors. I especially recommend Prisons Make Us Safer: And 20 Other Myths About Mass Incarceration by Victoria Law as an introduction to the realities of the prison system in the United States. 

If you are looking to do some truly deeper diving, this is the place to go for an archive of resources.

Finally, I have previously published a related article in Perspectives in Genetic Counseling. The intersection of genetic counseling and the prison industrial complex is an area I hope to continue writing about; I welcome any feedback, questions, and connections from colleagues!

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by | September 26, 2022 · 5:02 PM

Unprofitable Genetic Testing Labs – The Size of the Loss, The Reasons for the Loss, and What It Means for Genetic Counseling and Genetic Counselors

By Katie Stoll, MS, Jessie Conta, MS, and Michael Astion, MD, PHD

Genetic counseling is a critical part of the genetic services process, beyond just coordination and ordering of a genetic test. However, as the genetic counseling profession has grown alongside the expansion of genetic testing, it has become increasingly intertwined with and dependent upon the financial success of commercial genetic testing laboratories. The relationship risks undervaluing genetic counseling and the breadth of the services genetic counselors provide.

The genetic testing industry has seen rapid growth over the past two decades, with many new companies and billions of dollars invested into start-up genetic testing labs. Despite the enthusiasm of venture capitalists and other investors, commercial genetic testing labs are largely unprofitable, and the losses are significant and sustained. This is shown in Tables 1 and 2 below which are derived from analyzing publicly available, quarterly and annual financial reports (10-Q and10-K Filings) of publicly traded companies whose primary business is clinical genetic/genomic testing.

As shown in the tables, it is common for publicly traded, genetic testing labs to report annual losses of >$100 million. In 2021, only one lab, Fulgent, made a profit (Table 1). However, Fulgent’s 2021 – 2022 quarterly reports (Table 2) indicate that profits aren’t attributable to genetic testing, but rather to COVID test sales, which accounted for ~88% of their 2021 revenue. Myriad has seen a consistent decline in revenue since the US Supreme Court’s ruling in 2013, which forbid human gene patenting and therefore caused Myriad to lose their lucrative BRCA testing monopoly. Although the losses have not been as severe as their competitors, Myriad has not been profitable since 2019, and they have reported greater losses in the first two quarters of 2022 than their annual loss in 2021.

Profit and loss data is difficult to obtain from private genetic testing companies such as Color Genomics, as well as from genetic testing labs owned by much larger, diversified companies, as is the case with Ambry being owned by Konica Minolta. Similarly, profit and loss data on genetic testing is unavailable from integrated health systems, academic medical centers, or publicly traded labs –like Quest, LabCorp, and BioReference— who only have a small portion of their overall testing business in genetics. In regards to academic labs and labs in integrated health systems, our experience, as well as discussions we have had with colleagues strongly suggest that genetic testing is performed at a financial loss, and that it is the overall profit of these full-service labs that allow them to support genetic testing.

Why aren’t genetic testing companies profitable?

Publicly traded genetic testing labs are unprofitable for a variety of reasons. The top reasons are poor reimbursement from insurance plans and patients; intense competition; and excessive expenses for sales, marketing, and executive compensation. In addition, the inclusion of genetic counseling, which companies have highly valued as part of their testing service, adds an expense that is not seen in the other analytic sections of a full-service clinical lab.

Insurance reimbursement

The service of genetic testing is a costly one to deliver and is much more expensive than a lab’s cost to perform other tests. For example, the fully loaded cost of performing a typical test in a highly automated, hospital-based core laboratory is in the range of $10-$20 per test. This includes common tests like complete blood counts, electrolytes, basic coagulation tests, thyroid screening tests, and liver function tests.  For an insurance plan this type of common testing is >65% of their expenses. The cost to labs of genetic testing is much higher, often 10-100-fold higher. Genetic testing usually represents < 20% of an insurance plan’s spending on lab tests.

Why is genetic testing so costly to labs? The main reason is that it is difficult scale genetic testing in a manner analogous to common, high-volume laboratory tests. Compared to common tests, genetic testing is more labor-intensive, more time consuming, involves higher-wage staff, and involves technology that has a higher cost per test. Genetic testing is time consuming because it requires complex tasks not seen with common tests, such as variant analysis, curation, review, and updating. And for many companies, it also includes providing the genetic counseling service, which is often bundled into the service of providing the test. Overall, genetic testing is a personalized, complex technical service which has resisted, for now, the type of full automation that has benefited other parts of the clinical lab.

The high cost for performing genetic testing necessitates high costs to patients and their insurance companies. Historically, insurance companies are mediocre at regulating high-volume, low-cost lab tests because it is too cumbersome and expensive to manage. However, insurance companies have many effective tools for regulating high-cost procedures, including genetic tests. The result is that high-volume, low-cost laboratory tests have a relatively open door to reasonable insurance payments, and insurers invest only a little energy toward closing that door. In the case of genetic testing, the door is closed or only partially open.

Besides negotiating fees with certain labs, the main method that insurance plans use to control genetic test reimbursement is detailed medical necessity policies tied to preauthorization systems. Insurance companies either develop the policies and pre-auth systems or purchase them from third-party benefits managers. Overall, the method involves using software that aids decision making in combination with genetic counselors, nurses, and physicians who adjudicate cases at various decision levels. This approach is then married to an insurance plan’s usual and customary procedures for handling grievances from patients and labs that have been denied payment. For insurance plans, this type of complex system, which is both software and labor intensive, would have a poor return on investment if applied to low-cost, high volume lab tests. But for genetic testing, this type of system has an excellent return on investment, and so insurers are highly motivated to regulate genetic testing. In addition, these insurance systems tend to be overly tuned to block fraud, waste and abuse, and often delayed in keeping up with scientific evidence. Therefore, insurance systems may block some medically necessary genetic testing.

Patients bear high out-of-pocket costs for genetic testing. This is because they are financially liable when their insurers do not cover the test, and, even when insurers provide coverage, there still can be high deductibles or co-pays. In the laboratory industry, it is very expensive to recover the money that the patient owes, and poor financial recoveries from patients is common. This failure to recover the patient portion of the bill adversely affects the bottom line of genetic testing labs.

Response to poor reimbursement from insurers and patients

Many labs performing genetic testing have responded to preauthorization requirements by investing in resources – which sometimes can create an entire division or department – that provide support with prior-authorizations, as well as appeals and support when test coverage is denied. This can help grow the testing business because it removes a barrier that blocks some providers from ordering testing. However, the removal of the barrier comes at a high cost to the genetic testing lab.

To help patients directly, some labs have promised patients low out-of-pocket costs either through reducing the patient’s responsibility under their insurance plan, or by promoting self-pay options that avoids involving the insurance plan. Thus, some labs promise patient out-of-pocket maximums, typically advertised as about $100 when insurance does not cover testing.

For self-pay options that do not involve insurance, the price for genetic testing for patients is often much lower than the list price available to care providers, and it is highly likely that price does not cover the costs of the tests. The current going rate at most labs for self-pay testing for multigene panels is around $250, which is usually much less than what labs try to collect from payers, including Medicare and Medicaid for the same test.

Sales and Marketing

A review of publicly available, 10-K submissions, show that it is not unusual for genetic testing companies to have marketing and sales budgets around 40-50% or more of revenue, which is much higher than typically seen in established, full service clinical laboratories. This most likely relates to the goal of growing revenue and capturing market share, despite the high cost of achieving this in a competitive, and poorly reimbursed business. Those NSGC parties, sponsored luncheon and dinner events, “free” CEU opportunities, and even the complementary genetic counseling, all come at a cost for the marketing and sales budgets of these companies.

Executive compensation

Another contributor to financial losses in publicly traded genetic testing labs is the high pay of executive leadership, including chief executives. Review of executive compensation data shows that executive pay is often inversely correlated with net profits – the longer that a company lasts, regardless of how deep the losses grow, executives tend to be well rewarded. For example, Natera reported compensation for the company’s chief executives totaling $8 million while company losses totaled $128 million in 2018. Contrast this to 2021, when Natera’s C-Suite compensation was > $53 million despite company losses that were > $471 million.

Although these companies are not generating operating profits, their investors aren’t necessarily hurting as a result. Stock prices for boutique, genetic testing labs don’t often sync with the lab’s financial health, and based on reported trading of company insiders, some investors are gaining significant wealth despite the losses of these labs. For example, Invitae hit all time stock highs in December 2020 despite enormous losses reported in every quarter that year. The net loss for Invitae in 2020 was >$600 million, while that same year Invitae insiders cashed out more > $46 million in stock. Another example is that the current CEO of Natera cashed in nearly $76 million in stock over the past four years, while cumulative losses for Natera totaled >$ 1 billion over that same period.

What is at stake for genetic counseling?

A 2018 publication in the Journal of Genetic Counseling analyzed the financial challenges of commercial genetic testing labs and what that could mean for genetic counselors. The authors speculated that genetic testing companies may not find a path to profitability, and their ability to support genetic counseling services may subsequently decrease.

Since this initial analysis, the losses of these companies have continued to grow, and investors have become less enthusiastic. This has put pressure on many companies to change and adjust their business strategy in order to survive. For some, this means cost cutting measures to decrease their cash burn with hopes to increase the odds of profitability. And as predicted, difficult decisions are taking place with many genetic testing companies resulting in layoffs of staff, including genetic counselors. Last month, Invitae announced layoffs of over 1,000 staff, including most of their clinical genetic counselors. SEMA4 and Ambry Genetics have also had layoffs in recent months. Given the overall picture of the financial health of all these labs, and increasing challenges in raising funds, it is likely there will be more layoffs to come for genetic counselors and others who work at these companies.

What does the current financial state of genetic testing laboratories mean for the delivery of genetic services and for the genetic counseling profession? A substantial portion of genetic counseling is now delivered through genetic testing laboratories who have packaged genetic testing with the offer of genetic counseling to draw in clients. If we see fewer companies maintaining genetic counselors on their staff, where will genetic counseling support come from for these patients? In addition to the labs themselves, many of the growing genetic counseling telehealth companies are closely tied to the testing laboratories, with much of their funding and contracts coming through commercial laboratories rather than direct patient referrals or contracts with clinics. It seems possible that these arrangements could also be negatively affected with current financial pressures and cuts to “extra” costs. Genetic counseling is not an “extra” bonus service, but rather a critical part of the genetic services process. Relying on genetic testing companies’ funding to ensure access to this service does not appear to be a sustainable model.

For genetic counseling services to be sustained, independent of the financial health of corporate testing laboratories, it is essential that genetic counseling be recognized and reimbursed as an independent service, with inherent value that is separate from genetic testing. Recognition by the Centers for Medicare and Medicaid Services is a necessary step towards sustainable and independent genetic counseling services, regardless of service delivery modality. I hope you all will join in continued advocacy to see the Access to Genetic Counselor Services Act H.R. 2144 / S. 1450 enacted into law.

Michael L. Astion is a clinical pathologist who is Medical Director, Department of Laboratories at Seattle Children’s Hospital and Clinical Professor of Laboratory Medicine at the University of Washington. For almost two decades he worked at the University of Washington, Department of Laboratory Medicine where he was a Professor and Director of Reference Laboratory Services. His career is divided between clinical service, teaching, clinical service, and research and development. He is the editor-in-chief of Patient Safety Focus, which appears quarterly within AACCs Clinical Laboratory News. He is one of the founders of PLUGS (Patient-centered Laboratory Utilization Guidance Services), a national collaboration whose mission is to improve test ordering, retrieval, interpretation and reimbursement. Dr. Astion is a frequent speaker at professional meetings, where he lectures on issues related to laboratory test utilization; test interpretation; laboratory economics and outreach; and medical errors.

Jessie Conta is a licensed genetic counselor in the Department of Laboratories at Seattle Children’s Hospital. She received her Master of Science degree in genetic counseling from Brandeis University. As the Manager of the Laboratory Stewardship Program at Seattle Children’s, she leads genetic test stewardship interventions, including insurance alignment related to genetic testing. Jessie is also a co-founder and Director of Genetic Counseling Services for PLUGS (Patient-centered Laboratory Utilization Guidance Services), a national collaboration whose mission is to improve test ordering, retrieval, interpretation and reimbursement.

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by | July 28, 2022 · 7:47 AM

NSGC Board: With Roe Overturned, and Over a Decade Without Medicare Recognition, It’s Time For Change 

A Guest Post by Misha Rashkin et al

The Supreme Court’s recent decision to overturn Roe v. Wade is an historic event, and in many ways genetic counselors are in the eye of the storm. The National Society of Genetic Counselors (NSGC) has historically remained silent on the issue of reproductive rights, citing Medicare recognition as a bipartisan issue that supersedes patients’ reproductive freedom. Though the threat of losing Roe has been clear since Brett Kavanaugh joined the Supreme Court, and all but inevitable after Justice Coney Barrett took the oath, NSGC leadership has continued to focus solely on Medicare reimbursement. After more than a decade of following this strategy, NSGC is nowhere near getting our bill passed, and now patients are losing fundamental rights. It’s time for change.

What is Next for Genetic Counselors?

  • Going forward, there will be laws proposed in many states that could regulate what genetic counselors can document or say to their patients. 
  • To enact change, NSGC leadership will need to get involved in many legislative, legal, and electoral efforts. 
  • Electoral efforts will need to focus on local elected officials like District Attorneys offices, ballot measures, and state constitutional amendments. 

Bottom line: It is not acceptable for NSGCs political operation to remain silent on reproductive choice. We must act on issues that impact our professional lives and the wellbeing of our patients. To remain silent is to capitulate.

What about our bill to be recognized by Medicare? 

  • Based on public records, NSGCs efforts to have Congress recognize genetic counselors as Medicare providers has been ongoing since 2007, longer than many counselors’ careers. 
  • Our bill has been introduced three times as HR 7083 in 2018, HR 3235 in 2019, and HR 2144 in 2021, and has yet to be considered by a single committee in Congress. 
  • While progress has been minimal, costs have ballooned 450% over 10 years, from $80,000 per year to $360,000 per year! 

Bottom line: Sacrificing our commitment to patient autonomy and agency is a grave ethical error for an industry that prioritizes these values. Sticking with the status quo is a failure of the leadership’s ethical and fiduciary responsibility. Board members are required to accept their fiduciary responsibility for NSGC the same as they would for their own personal finances.

What Can NSGC Do To Repair the Damage?

  • The NSGC Board should put out a Request For Proposals (RFP) requesting bids from new lobbying firms every few years, beginning now. This is standard practice for nonprofit organizations. Smith Bucklin has not been held accountable for their lack of progress. 
  • RFPs should include lobbyists who have worked to get mid-level providers recognition.
  • This process should be transparent and prioritize bids from political operatives who have:
    • Experience working with our targeted committees (Energy & Commerce, and Ways & Means in the US House) to move our legislation forward.
    • Experience working on reproductive freedom at the state and federal level. 

Bottom Line: The Board should create a process where an RFP is put out at some regular cadence, such as every three years. It’s time to hold our Director of Government Relations and lobbyists accountable. If you agree, please sign this petition to register your support for accountability, transparency and change. 

[alphabetical order]

Barbara Biesecker, PhD, MS, CGC

1989-1990 NSGC President

Jordan Brown MA, MS, CGC

2022 Chair, NSGC Public Policy Committee

Member, NSGC Reproductive Freedom, Access, and Justice Task Force

Founding Member, Genuine Collective

Elizabeth Fieg, MS, CGC

2020-2022, Public Policy Committee Member

Michelle Fox, MS, CGC

2020-2021, NSGC Director at Large

2008 Chair, Jane Engelberg Memorial Fellowship 

Shreshtha Garg, MS, CGC
2020-2021 Chair, Equity and Inclusion Implementation Committee

Carrie Haverty, MS, CGC

2022 Chair, NSGC Membership Committee

Brianne Kirkpatrick, MS, CGC

204-2017, NSGC Public Policy Committee Member

Shelby Koenig, MS, CGC

Member, NSGC Reproductive Freedom, Access, and Justice Task Force

Megan Mckenna, MS, CGC

NSGC Member since 2020

Kristen Miller, MGC, CGC

2022 Senior Co-Chair, NSGC Prenatal SIG

Ana Morales, MS, CGC

2016-2020, ABGC Board of Directors (President, 2019)

2022, NSGC Expert Media Panel

2022, NSGC Practice Guidelines Committee Member 

Shivani Nazareth, MS, CGC

2020-2021, NSGC Director at Large

2021-2022, NSGC Reproductive Freedom, Access and Justice Task Force Member

2013-2016, Public Policy Committee Member

Kate Partynski Emery, MS, CGC

NSGC Member Since 2015

Aarti Ramdaney, MS, CGC

2019-2021, NSGC Prenatal SIG Co-Chair

Misha Rashkin, MS, CGC

2018 Chair, NSGC Public Policy Committee

Hillary Rieger, MA, MS, CGC

NSGC JEDI Task Force, 2021-22 

Sally A. Rodríguez, ScM, CGC

2021-2023, NSGC Membership Committee Member

2021-2023, NSGC Justice, Equity, Diversity, & Inclusion (J.E.D.I.) Committee Member

Katie Sagaser, MS, LCGC

2020-2022 NSGC Public Policy Committee Member

2019-2020 NSGC Prenatal SIG Co-Chair

Founding Member, GENUINE Collective

Kendra Schaa, ScM, CGC

2020-2021, Chair, NSGC Access & Service Delivery Committee

2017-2020, Member, NSGC Access & Service Delivery Committee

Heather Shappell, MS, CGC

2020-2021, NSGC Director at Large

Ashley Svenson, MS, CGC

2021-2022, NSGC Reproductive Freedom, Access, and Justice Task Force Member

Elizabeth Varga, MS, CGC

2018-2019 NSGC Director at Large

2016-2017 Co-chair, Pediatric Subcommittee, Cancer SIG

2014 Chair, Nominating Committee, American Board of Genetic Counseling

Chelsea Wagner, MS, CGC

2022-Present, Prenatal SIG Co-Chair

2022-Present, NSGC Abstract Review Committee

2019-2021, NSGC Marketing and Communications Working Group

2017-2020, NSGC Membership Committee

Kate L Wilson, MS CGC

2014 Chair, NSGC Access and Service Delivery Committee

2018 Chair, NSGC Education Committee

2012 Chair, NSGC Prenatal SIG

2017 Chair, NSGC Laboratory/Industry SIG

Beth Wood Denne, MS, CGC

2019 NSGC Cares Task Force

2011 Chair, Annual Education Conference

2013-2016, ABGC Board of Directors (President, 2016)

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by | May 13, 2021 · 9:30 AM

Not Ready to Make Nice: Juggling unabashed advocacy and NSGC’s insidious culture of “nice”

Jordan Brown, MA, MS, CGC

All sentiments expressed in the essay below are completely my own and do not represent the opinions of either The Ohio State University or the National Society of Genetic Counselors (NSGC).

This essay was initially intended as a blog post for NSGC Perspectives.*

Reacting to the recent Ohio and Arizona legislative “reason bans” which prohibit abortion based on prenatal diagnosis, many of my colleagues and members of NSGC wrote to the Board about the need for the organization to respond to these developments. After multiple conversations, NSGC Leadership asked me to write a piece explaining to members that it is okay to be an unabashed advocate as an individual genetic counselor (and not under the NSGC umbrella) and that advocacy via NSGC does not need to be the only avenue through which to voice opinions and support change.

I agreed to this task in the moment, seeing it as a way to reach members and encourage participation in ongoing efforts focused on increasing access to reproductive care. But when I sat down to write, I could not do it without feeling like I’m directly supporting a culture of “nice” in our organization – in other words, a culture of being complacent and biting one’s tongue when disagreements exist. Although this culture of “nice” is not something that is unique to (the lack of) advocacy efforts around reproductive issues, I think it is especially highlighted in this sphere.

In my first year as a NSGC member, I applied for and was selected to serve on the Public Policy Committee (PPC) and thought I had found my niche. Did I know exactly what the committee did? Nope, but I was filled with optimism that this role would permit me to be involved in hard, meaningful conversations about policy-related issues with my colleagues. This was particularly important to me when considering our organization’s position on reproductive justice, and specifically regarding abortion. I was surprised to learn that the role and responsibility of the PPC was really limited to revision and reaffirmation of existing position statements, most of which, however relevant and important to our profession, tread very lightly on issues which can be perceived as “political,” such as social and reproductive justice concerns.

Throughout my time as a PPC member, I noticed a lingering sense of frustration that the committee was consistently instructed not to raise issues related to NSGC’s stance on reproductive freedom and abortion. We had a position statement on “Reproductive Freedom” that was initially composed in 2014 and reaffirmed with no edits in 2017 after an attempted revision was quashed. Is the position statement well written? Sure. Does it acknowledge the importance of autonomy in reproductive decision making? Yes. It is an adequate statement, and that is about it. It has just enough substance to be able to say we have a statement, but not enough substance to be truly meaningful or actionable in any way, shape, or form.

Conversations about whether the Reproductive Freedom statement should be reaffirmed or revised ultimately culminated in the decision, year after year, to leave the unedited 2014 statement off the PPC’s working docket. Each time, the justification for this was that any controversial moves might jeopardize the passage of our federal bill. In 2021, as I transitioned to PPC leadership, it quickly became apparent that much of the feedback was coming directly from NSGC’s [unelected] lobbyist. I will not lie, it would be easy at this point to let my emotions take over. Actually, I am going to let them take over for a second. The mansplaining emails, the gas-lighting, the rude political comments at conferences, and the long-standing bizarre seemingly patriarchal power dynamic with NSGC Leadership all feels icky and gross.

However, this is something much bigger than personal feelings. The culture of “nice” is, and historically has been, pervasive in our profession. Sure, I understand that not everyone is up for a fight. This is not about excluding or devaluing our colleagues whose personal values and convictions do not align. This is not about picking sides. It is okay for genetic counselors to not personally support abortion, in fact it is beautiful to have an opinion-diverse organization. What is not okay, however, is for the organization as a whole to place the responsibility of advocacy on the few members who are actually willing to put a target on our backs under the dismissive rhetoric of “abortion is a topic that not all members agree upon.” Additionally, let’s stop displacing the weight of this onto our patients. Obviously, we all want our patients to have autonomy in their reproductive decision-making. This does not just mean abortion; this means access to reproductive healthcare as a whole, and this is integral to our profession regardless of one’s specialty or personal values. Reproductive justice is much, much more than abortion and is inherently intersectional. J in JEDI stands for Justice. If NSGC is outwardly dedicated to JEDI efforts, NSGC must also be outwardly dedicated to reproductive justice.

Frankly, at this point it seems as if many advocacy efforts within NSGC are completely on hold pending the passage of the federal bill. Our bill is important, for so many reasons. While there are other organizations that advocate for other efforts, NSGC is the only one that is advocating for the recognition of genetic counselors by CMS. However, at what point does speaking up about a larger societal injustice (namely, decreased, and in some cases completely restricted access to abortion care) that may come with losing some (or even a lot) of support on the Hill outweigh playing the politics game? For years, members have urged NSGC leadership and the Government Relations team to speak up on the ongoing legislative efforts to decrease access to reproductive health care; to boldly state that we as an organization (whose field [clinical genetics] was born of undeniably eugenics roots) believe it is unquestionably WRONG for forced sterilizations to occur in any circumstance but particularly at the US/Mexico border; and to acknowledge that we cannot have authentic JEDI efforts without including advocating for reproductive justice. At some point, continued silence and non-action is complicity.

Most of our members have ovaries and a uterus. One of every four people with functional ovaries and uterus has an abortion during their lifetime. Do the math. As a genetic counselor who has had an abortion, our organization’s continued silence stings. I have no negative feelings or regrets about having had an abortion, however NSGC’s lack of response on the essential nature of access to abortion care is hurtful. I cannot be the only one feeling this way.

As a middle-class, white, cis-female with access to great healthcare and reasonable understanding about how to navigate the US health system, I had to travel out of state to have a second-trimester abortion. I do not feel that this is the space to discuss the details of my own experience, but I will say that the added stress of jumping through logistical hoops further intensified my own emotions at the time. This is real stuff, and this was all before the recent attention on anti-abortion legislations throughout the country.

I only disclose my own experience to highlight that it is often hard for individuals regardless of race, socioeconomic status, or gender identity to access abortion services and reproductive healthcare in general. For individuals without my resources, the challenges are more acute, and care is often inaccessible. If we are going to say that we, as NSGC, value diversity, equity, inclusion, and justice, then we must advocate for access to reproductive healthcare and abortion services as an organization. We know there is power in numbers, it is far overdue that we utilize that power and use our voice to advocate for both ourselves and the patients we serve.

This essay is surely not what the NSGC Leadership expected when they asked me to write a piece on how to be an advocate outside of NSGC. It goes without saying that you should be able to be an advocate outside of NSGC. There should be no repercussions from the organization for individuals advocating for a better world as they see it, and for taking a stand and being outspoken about injustices pertaining to our profession, the medical community, and society at large. The fact that this would need to be said is problematic in and of itself. Let us disrupt the culture of “nice” within our organization so we can truly be unabashed advocates for ourselves and our patients. 

NSGC’s continued silence on this issue has not and will not go unnoticed. If you feel as though NSGC should take a clear and strong stance on reproductive justice, please consider the following action plan.

  1. Email the Board, and consider encouraging your patient advocates to email the Board. Let them know how important it is to take a firm stand on this issue.
    1. Who do I email?
      1. nsgc@nsgc.org (Attention NSGC Board of Directors)
  1. What do I include in the subject line? (Feel free to copy and paste)
    1. NSGC Advocacy for Abortion Access and Reproductive Healthcare
  1. What do I say? (Feel free to copy and paste)

Dear NSGC Leadership,

As a member of NSGC, I would like to see the organization respond directly to ongoing legislative efforts to decrease access to abortion and to advocate for reproductive healthcare. Our voice as genetic counselors on these issues is long overdue.

Thank you,

Name

  1. Take this two question survey regarding your opinions NSGC’s role in advocating for abortion access and reproductive healthcare.
  2. Advocate outside of NSGC. This list was curated with the help of Katie Sagaser, MS, CGC. The resources and suggestions listed below are just a stepping stone. Do some research regarding ongoing advocacy efforts in your state.
    1. Join the National Network of Abortion Funds (https://abortionfunds.org/) and become a monthly donor.
      1. Consider setting up a recurring donation directly to your local fund.
      1. Consider whether you might be able to support not only your local fund, but also a fund for a region to which you frequently need to refer patients. For example, the DC Abortion Fund and Baltimore Abortion Fund both provide funds to out-of-state patients traveling for abortion care in those areas.
      1. What else can you do to help support your local fund? Do you have some free time in which you could provide transportation to someone who needs a ride to their appointment? Your local fund facilitates that. Do you have a spare bedroom that you could loan to someone who needs to stay overnight before their procedure? Your local fund facilitates that. There are SO many ways to help these local funds (and independent abortion clinics, too) – usually volunteers are needed to help staff helplines, create content on Instagram and Twitter, translate documents into Spanish, and assist with fundraising.
      1. Regarding Arizona specifically: The Abortion Fund of Arizona (https://www.abortionfundofaz.org/) is a NNAF affiliate and a fantastic resource.
    1. Set up a recurring donation to SisterSong (https://www.sistersong.net/), the largest national multi-ethnic Reproductive Justice collective. SisterSong founders and leadership are truly the change makers and who we need to be looking up to in the reproductive justice space.
    1. Regarding Ohio specifically…
      1. Ohio GCs, consider donating your money and/or time to Women Have Options (https://www.womenhaveoptions.org/), which provides financial and practical assistance for abortion services.
      1. Support New Voices for Reproductive Justice (http://www.newvoicespittsburgh.org/), “a social change movement dedicated to the health and well-being of Black women and girls through leadership development, Human Rights and Reproductive Justice.”
      1. Consider referencing OPEN (http://open.osu.edu/) for current educational material and ongoing research on reproductive healthcare policy in the state of Ohio.
      1. See below for information about NARAL Pro-Choice Ohio.
    1. If you are particularly interested in public policy, you might consider joining your local NARAL Pro-Choice America chapter (they exist in CA, CT, GA, MD, MA, MI, MS, NV, NC, OH, OR, VA, WA, and WY).
      1. Sign up to take their volunteer training and join one of their committees – whether you want to ensure reproductive justice in the form of promoting comprehensive sex education in schools, contraceptive access at colleges, menstrual product access to immigrants, or health policy measures as they pertain to reproduction in your state, there is going to be a committee for you.
      1. You do NOT need to reinvent the wheel because there literally are folks whose entire jobs are devoted to this – they just need our time commitment (and usually donations don’t hurt either).
    1. The ACLU has a specific Reproductive Freedom initiative, and on their website you can sign up to donate your time in the form of hosting/organizing events, making calls, and other ways.
    1. Consider donating your time, spiritual energy, and physical presence in the form of being an abortion doula.
    1. Say the word “abortion.” Seriously, say it. Mirroring patient language is important, but the more that we avoid this term in daily life, the more that we add to its stigma. How can you speak more openly about abortion as an important and necessary component of healthcare? Can you perhaps even invite some of these conversations by carrying an “abortion is healthcare” tote bag to the grocery store, or wearing an “abortion is healthcare” mask to the gym?

Be on the lookout for the launch of the GENUINE Collective: Genetics Providers United in Efforts for Reproductive Justice. This Collective will serve as a landing page for advocacy resources and opportunities as well as an open discussion forum for members.

The GENUINE Collective is an independent group of clinical genetics professionals dedicated to shameless advocacy for reproductive justice in the United States of America and beyond.

While persons involved in the Collective may hold memberships in various professional medical societies, the Collective is not, in any way, affiliated with professional medical societies.

*Previously I said NSGC Perspective’s declined to publish this article, NSGC has asked me to retract this statement, I would like to clarify that while I never received a written rejection from NSGC, they did not respond to the submission (after requesting an essay with a quick turnaround time), only responded after author follow-up, and stated that this piece was not in line with the goal of Perspectives.

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