Category Archives: Guest Blogger

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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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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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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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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Guest Post: If Gay Means Happy, Then Why am I so Sad?

By Austin McKittrick

Austin is a genetic counselor for Genetic Support Foundation, a non-profit genetic counseling group, where he provides telehealth genetic counseling from his home base in Vancouver, WA. He a first time blogger, long time reader of the DNA Exchange.

 

A study recently published in Science sought to answer the age-old question: Where’s the ‘gay gene’? As a member of both the genetics and LGBTQ+ community, this headline naturally piqued my interest. I’ve always thought that this question is inherently a double-edged sword: by ‘proving’ that non-same sex attraction is in some way genetic, the whole ‘it’s a choice’ argument can finally be put to rest. But finding a scientifically detectable ‘cause’ for non-heteronormative behavior naturally brings up an equal (if not greater) level of concern.

The intentions of researchers are often not what is embodied by the products of that research. I honestly don’t think that the creators of genetic testing for ancestry thought that this testing would one day be used by the Canadian government to try to sort out where migrants to their country are ethnically from. But maybe they should have.

Even when we think we understand the genetics of a trait, the outcomes often aren’t as straightforward as we once believed. Particularly for a trait such as ‘nonheterosexual behavior’, where social, religious, family, and political influences also strongly affect one’s beliefs and how they may choose to reconcile those beliefs with their lifestyle. Genetics is leaping forward faster than the majority of us had probably anticipated, and we’re getting a real lesson about putting the cart before the horse.

There are some issues with how the study was conducted, as sexual identity is very complex and some of the questions have been viewed as being too binary and focused on behavior rather than sexual orientation. The researchers categorized people into two buckets: those who have EVER had ONE or more same-sex sexual experience are categorized as ‘nonheterosexual’ while those who have never had a same-sex sexual experience are categorized as ‘heterosexual’. They do make an attempt later in the study to outline that sexuality is a spectrum, but that assertion is buried amongst other extrapolations.

The data sets for this study were collected from the UK Biobank, as well as direct-to-consumer testing company 23andMe. Companies such as these encourage their customers to consent to having their DNA used for research, promising that their selfless contribution will further the field of genetics and healthcare. In all actuality, it appears that this data is being sold to entities that are using it for less medically noble endeavors. Aside from individuals not fully understanding that their data could be used for such ‘research’, they may actually unknowingly be participating in research that could potentially lead to discrimination and other harms against them in the future.

The authors of the ‘gay gene’ study determined that ‘like other behavioral traits, nonheterosexual behavior is polygenic’. There you have it folks: it’s not ONE gene. It’s LOTS of genes! Is that better? Worse? Depends on what you do with that information…

Enter GenePlaza, a company that boasts that it can take the DNA information that you’ve received from companies like 23andMe and Ancestry.com and use its internal apps to tell you things like how smart you are or how good you are at math (in case your grades in school didn’t tell you already). With data taken from this new study, GenePlaza proposed that for $5.50 they could tell you exactly how gay you are.

Backlash to the announcement of the app was swift, and a petition was quickly announced in an effort to get the app shut down. Although at the time of this publication it not yet reached its goal of 2,500 signatures, it appears to have been effective as there is no sign of the app now on GenePlaza’s app site.

It’s tempting to want to give GenePlaza the benefit of the doubt. ‘Oh they just thought it would be a harmless app’ or ‘They probably just thought it’d be a good party trick’. However, the revelations that the app’s developer, Joel Bellenson, is based full-time in Uganda paired with the news that this year Uganda is announcing plans that would make the death penalty punishment for homosexuality makes it seem that something more nefarious may be at play.

As the authors of the study said, we should resist ‘simplistic conclusions because the behavioral phenotypes are complex, because our genetic insights are rudimentary, and because there is a long history of misusing genetic results for social purposes.’

Some have raised concerns about the motivation of such research studies. But once something like this is out of the bag, it’s very difficult to put back in. No matter the motivation, this is another shining example that when it comes to genetic technology, we regularly need to be asking ourselves not only ‘Can we?’, but ‘Should we?’.

 

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Guest Post: We Can Do Better – The Experience of a Minority Genetic Counselor, by Tala Berro

Tala Berro is a genetic counselor in the Boston area. She is a queer, Arab woman who is also a racial justice and LGBTQIA+ activist. You can follow Tala on twitter here: @tala_berro

Bob Resta recently wrote a blog on his experience of being a man, as well as the advantages and disadvantages of being a woman, in our woman-dominated field. He called upon us good readers to share experiences “where you are not quite like everyone else.” Being a queer person of color in genetic counseling, I immediately took up his call. In part due to my various identities, there have been countless instances during my genetic counseling training and career when I have felt “not quite like everyone else.”

Let’s start with intersectionality, a term coined by Black feminist scholar Kimberlé Crenshaw in 1989 to highlight the ways in which black women were excluded from the feminist movement. Crenshaw notes that “not only are women of color in fact overlooked, but their exclusion is reinforced when white women speak for and as women.” In this blog post, I want to take a deeper dive into how my own intersecting identities as a queer, Arab woman affect my experience as a genetic counselor.

The genetic counseling profession within the Unites States is overwhelmingly white. As reported by the National Society of Genetic Counselors (NSGC), 92% of the 2018 Professional Status Survey respondents identified as white, which is easily visualized when one walks through the exhibit hall at the NSGC Annual Education Conference. Although there are many reasons why we often see a higher percentage of white individuals in jobs that require a graduate degree, genetic counseling is an especially white field. In comparison, 54% of software engineers are white, 80% of public school teachers are white , and 68.2% of physicians/surgeons are white.

The foundation of empathy is what drew me to the genetic counseling profession. I knew that I would come in as an outsider, but I hoped that caring, open-minded genetic counselors would make for caring, open-minded classmates, supervisors, and coworkers. However, we have a long way to go. Genetic counseling training programs incorporate lessons on the importance of culturally appropriate counseling of patients, but this same openness and acceptance is not always extended to fellow genetic counselors.

I started to notice my “otherness” in the field of genetic counseling from the beginning of graduate school. Being an Arab genetic counseling student always had its pros and cons. My favorite instances as a student were when an Arabic speaking patient would come into a genetic counseling session and I could utilize my knowledge of Arabic. This shared language and its ability to add comfort to my patient always felt really special. More often than not, though, sessions with Arab patients would end in a debriefing session with a supervisor who would ignorantly state microaggressions, judging family sizes, and gender dynamics. After one of these sessions, my supervisor and I were discussing the patient and mentioned the specific Arab country they were from. A medical professional in the workroom overheard and noted that, to her, this specific country is associated with danger and violence. There was no response to this comment. I was left shocked, dismayed, and anxious, without an outlet to seek support from other genetic counselors of color or Arab background.

What is currently seared into my mind as a genetic counselor of Arab descent whose community often attends mosque, is the massacre in New Zealand. I came to work devastated and shaken. While not all individuals of Arab descent are Muslim, I (and many others) consider those who are Muslim to be members of my community. Perhaps a genetic counselor saw a Muslim patient that Friday and provided comforting words. I wondered, though, how many genetic counselors reached out to their peers or students who may have been impacted by this. From my own experience of not receiving messages of support, I would guess not many.

In addition to racial barriers, being a queer genetic counselor comes with its own barriers to navigate. Based on my training experience, genetic counselors are growing in their awareness of pronouns and gender identity, often using the word “partner” when counseling. However, on an interpersonal level, it takes more than just awareness for true inclusion. I recall a conversation from back when I first started as a genetic counseling student in which I proudly identified myself as queer. This statement was met with discomfort and confusion. I know that genetic counselors are educated on the importance of mindfulness and inclusivity of the LGBTQIA+ community and are taught to be verbally-inclusive with patients who identify this way during a session. However, there seems to be a discrepancy in how these lessons of acceptance are actively applied by genetic counselors in and out of clinic. The ability to sustain a relationship with a patient over a 60-minute genetic counseling session does not translate to intentionally cultivating an authentic relationship with someone of a different identity from you.

One universally challenging aspect of genetic counseling training is providing and receiving feedback. To be evaluated on your words, demeanor, and body language while you are learning to interact with patients and cope with emotional situations is difficult. However, feeling like you are also being evaluated for your values, beliefs, and cultural upbringing is much harder. At times, I have been critiqued for my character and values, as opposed to my specific counseling skills. I have been encouraged to “play devil’s advocate” to my own beliefs. For example, during my training, I was given feedback that highlighted my potential to advocate for underserved patient populations, and also challenged me to find ways of connecting with patients who are different from me. This feedback came before I even had the opportunity to interact with a single patient. I felt critiqued not on behaviors I exhibited but on behaviors that were assumed of me. It also felt like this feedback was unnecessary reiteration that I am different, as the minority, and that I will be expected to live and fit in a world of the majority. Through these experiences I wondered: were my professors and supervisors feeling defensive because I was different from them and teaching me felt different than teaching others in our field? Who could I turn to within the field to talk about my thoughts and concerns?

Whenever I hear the term devil’s advocate, I think back on a blog post by Juliana Britto Schwartz. She writes, “dearest devil’s advocates: speak for yourself, not for the ‘devil’. Teach yourself. Consider that people have been advocating for your cause for centuries, so take a seat. It’s our time to be heard.” It is often forgotten that those with underrepresented identities have lived their entire lives being forced to understand the majority. These same privileged experiences to which I was encouraged to have an open mind are mirrored by what I read about in fiction, watch on television, and learn about in the history books. As a queer genetic counselor of color, I understand how to navigate these spaces because I have been forced to my whole life and will continue to do so in my professional life. Instead of ensuring that I understand and empathize with the majority experience, why don’t we make sure that the majority understands and empathizes with the minority experience?

As genetic counselors, we consistently discuss and learn about empathy for our patients. My hope is that we can take these lessons and apply them to our colleagues and peers outside of a counseling session. To my fellow genetic counselors, I propose the following version of the golden rule: treat your peers as you treat your patients.

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Anonymous Guest Post: Being A Genetic Counselor As Someone Affected by Mental Illness

This anonymous guest post was written in response to a request in a recent blogpost by Bob Resta asking for genetic counselors who feel that they are different in some way to write about their professional experiences. In a departure from the usual policy of The DNA Exchange, we have agreed to respect the author’s wish to maintain anonymity. For another view of life as a genetic counselor with a perceived disability, see Kelly Rogel’s post from about 10 years ago.

Around six years into my career as a genetic counselor I was given the diagnosis of bipolar type I. Previously I had a diagnosis of severe depressive mood disorder since I was 18 and had managed to make my way through college and into the work force (although it was a very rocky path) before I received the proper diagnosis and medication.

How did this diagnosis affect me as a genetic counselor?

The stigma surrounding mental illness is huge. While I believe it is getting better, I have been at clinical meetings where patients with mental illness have been discussed by different specialists and it seems that the patient is reduced to just their diagnosis. Bipolar, schizophrenia, obsessive compulsive disorder…this make me fearful of disclosing my disorder to colleagues. At the present time my direct supervisor and the head of the department know my diagnosis and are highly supportive. I struck it lucky, however. Unfortunately, in a lot of situations once you have that label of being bipolar it seems everyone looks at you through that lens all the time. Having a bad day? Oh, it’s the bipolar and you’re depressed. Feeling great? You must be manic. It’s frustrating and also means you are constantly second guessing yourself. It also means people aren’t recognizing that you have the normal range of emotions as everyone else – you are not your diagnosis.

It is both a blessing and a curse that bipolar is an ‘invisible’ disorder. You can’t look at me and tell that I have a mental illness, so I don’t have to disclose it to anyone if I don’t want to. However, there are days where getting yourself dressed to go to work feels like walking through quick sand, or you have foggy thinking due to the medication you have to take, and it’s hard to explain this to people when on the outside there’s nothing “wrong” with you. Obviously if these side effects are extreme then it might not be appropriate to be in the workplace, but there are many days that you do have side effects from medication, for example, but it’s not severe enough that you need to take a sick day. It’s a bit like having a mild cold and going to work anyway.

With bipolar, if you want to function then you have to learn how to develop insight into your condition and know your “‘red flags” for both depression and mania. This means that if I feel myself heading in one direction or another, I can nip it in the bud using medication and other treatments before I become a danger to myself or to patients. Unfortunately, I have experienced psychosis several times and have needed hospitalization once in my time as a genetic counselor. While my mental state was deteriorating my supervisor and I made the decision to take me off seeing patients until I recovered. An independent clinician provided by the hospital saw me to assess when it was safe for me to begin seeing patients again.

With patients it’s given me empathy and an understanding of those who have their own mental illness. I am often able to suggest resources available through the public health system that I am aware of that others may not be. For several reasons, though, I do not in any circumstances disclose my condition to patients. I feel that it would be unprofessional to do so as it takes the spotlight off the patient and moves it on to me, I feel the stigma around mental illness may be detrimental to the counseling relationship, and I also feel that you don’t have to have a mental illness to feel empathy towards someone with the condition. I also do not want my patients or colleagues feeling that my clinical care is impacted by my diagnosis.

It’s a difficult life to lead, but I know I’m very lucky to have highly supportive supervisors who have truly made an effort to understand the condition and how it is managed. I imagine my experience would have been very different if the resources available were not in place or I didn’t have access to them.

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The Hidden Costs of “Free” Genetic Counseling

A Guest Post by Eleanor Griffith, MS, CGC

Eleanor is the founder of Grey Genetics, a telehealth genetic counseling and consulting company.  Find Eleanor on twitter @elo81.

 

A lot of genetic testing companies are now offering genetic counseling along with genetic testing. That’s great, right? Great to see genetic testing companies hiring genetic counselors. Great for patients because it expands access to genetic counseling services to patients who wouldn’t otherwise receive genetic counseling.

Or actually, maybe not so great. Concerns related to conflicts of interest have been discussed on the DNA Exchange and elsewhere and are worth discussing further and at length. For starters, see here, here, and here.

But my gripe is that when a lab offers “free” genetic counselingit’s not really free. The cost is just hidden, bundled into the cost of the test. Hiding the true cost of genetic counseling in turn diminishes the perceived value of genetic counseling services.

Genetic counselors providing “free” genetic counseling get paid for their work. And they should. But the amount that it actually costs to provide genetic counseling vs. the amount that it costs to run a genetic test is not transparent—not to the patient, not to the physician, and not to the insurance company—which may or may not cover “genetic counseling.” Or may or may not realize that they do, in fact, cover the cost of some sort of genetic counseling(-ish) services by covering the cost of the test.

From a business perspective, for genetic testing labs, “free genetic counseling” is a no-brainer. It’s a big selling point and increases the odds that a healthcare provider will keep sending tests to the laboratory that is able to meet the very real counseling needs of their practice. As long as laws and regulations allow it, I don’t see this changing.

If the recognized product is the genetic test, and the main (or only) source of revenue for genetic testing labs is insurance reimbursement or out-of-pocket payments from patients, then the salaries of genetic counselors working for genetic testing laboratories are basically being paid by insurers + patients. If you follow my logic, this means that insurers will cover and patients do in fact pay for the (hidden) cost of lab-based genetic counseling, bundled into the cost of genetic testing. But insurers often don’t cover the cost of independent genetic counseling. Conflict of interest aside, this strikes me as ridiculous.

Away from the morass of insurance, patients and consumers of healthcare are being trained to see price tags attached to direct-to-consumer genetic testing products of dubious value, while genetic counseling is “free with purchase!” Even for clinical genetic tests ordered through physicians, self-pay prices are becoming more accessible. The logic, of course, is that labs will have a high enough volume of tests to scale and still make as much or more of a profit from testing…. Genetic counseling, however, cannot scale in the same way. This is why widgets get cheaper and cheaper while the cost of most professional services that require advanced degrees and involve working with clients one-on-one—lawyers, doctors, psychologists, financial consultants—remains relatively high.

While building up my private practice, I work part-time for an agency offering “free” genetic counseling to patients who respond to a quiz on facebook. I love it and I hate it.

I love it because I speak with high-risk patients who have never been referred to genetic counseling in a traditional way—many of whom have never heard of the BRCA genes. Patients who are interested in going forward with testing receive a copy of my consult note (yep, and a test kit) to take to their healthcare provider. Those who decline testing still receive a consult note with a copy of their family history and are encouraged to share it with their healthcare provider. Their healthcare provider has the option of including my name on the test requisition form so that I can receive and review results with their patient. Initially, I’m scheduled for an hour with each patient. If the patient needs more time to gather family history or to speak with someone in the family who would be a more appropriate candidate for testing—no problem, I just schedule her for a second call. I’m connecting with patients who would otherwise never have known of the option of genetic testing, would never have guessed that their insurance would cover the cost of testing for them, and had no idea of the impact it could have on their medical management and the value it could provide to their family members.

I hate it because the agency of course has a relationship with a specific laboratory. That laboratory happens to be the laboratory that I would recommend above others for hereditary cancer testing. This makes me feel good about the quality of testing that patients actually end up having—but also means that my professed recommendation should be looked upon with skepticism. Although the modest amount I’m paid is not affected by whether or not a patient goes ahead with genetic testing, and although I’m not privy to the details of the arrangement  between the agency I work for and the genetic testing laboratory—in reality, I’m obviously still being indirectly paid by the commercial testing laboratory. I’m just part of their operating costs.

I address patients’ questions about the costs of genetic testing, the likelihood that it will be covered by insurance. But there’s never a question as to how I’m getting paid, or why I’m getting paid. There’s no price tag assigned to the 30-90 minutes I spend talking with them. Sometimes patients are in a quiet place for our phone conversations. Sometimes they’re washing dishes, driving a car, picking kids up from school. After all, it’s a free call related to an impulse click on facebook. I have a Master’s Degree in Human Genetics, but my time costs them…. absolutely nothing. Or rather, the cost of my time is bundled into the cost of the agency’s services which is in turn paid by the laboratory which is in turn paid by insurers, which is in turn paid by my patients’ insurance premiums and/or taxes.

I feel less icky about this set-up than I had expected. (See the love paragraph.) Conflict of interest aside, however, this is a nasty bandage on a broken system in which the cost of genetic counseling is bundled along with the cost of testing rather than being recognized and billed for as a service provided by specialized medical professionals.

As uncomfortable as I feel getting indirectly paid by a laboratory, I feel equally but differently uncomfortable with charging patients for genetic counseling—which is exactly what I’m doing in private practice. The first patient who paid upfront and told me how valuable my time had been to her and how appreciative she was made it easier. But I still feel awkward asking patients to pay me. Most of us who have worked in hospitals have been similarly used to having the cost of our services swept up into other hospital costs and have not had to tell patients, “It will cost $X to see me.”

I think our time and services are worth $$$. Whether we work in industry, private practice, or for a hospital, I think we need to learn to be unapologetic about the fact that even if we love and find meaning in our jobs, we also work to make a living. The value of genetic counseling services should be accurately reflected in an associated cost. We’ve come a very short way from being a collection of mostly white, upper-middle class housewives who are happy to do volunteer work and don’t need to make an income. We need to take another step and get comfortable with transparently charging for the work we do.

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The GC Crucible: the pressures on modern genetic counselors open the doors to opportunity

A Guest Post By Brianne Kirkpatrick

In a chemistry lab, a ceramic crucible held over an open flame melds disparate materials into a single, new, cohesive thing. Indestructible, it stands up to the heat and pressure. When used in metaphor, it’s a severe test or tribulation that leads to transformation. What comes out of a metaphorical crucible is the true character brought about by the need to adapt and change in a new environment.

 

If there is one thing I can get behind, it’s a belief that our job as genetic counselors is getting

harder. We work in a cauldron of new pressures and new challenges, ones that are causing us to adapt and discover what is at the core of our profession and what make us strong and unique, as individuals and as a cohesive group. We’re in a crucible right now, and that Bunsen burner is cranked up high.

 

Our clinical challenge is that the more we learn about genetics, the more complexity we discover (see item two in Laura Hercher’s top ten stories list for 2015 ). More information makes our job harder, even as it provides new hope for our patients. Similarly, the challenges of discovery and complexity that complicate our lives also provide new opportunities for genetic counselors.

 

How do we capitalize on those opportunities? Here are three suggestions:

 

  1. Rally around the development of the Genetic Counseling Assistant vocation. The NSGC funded a grant to study this, and there have been discussions about this at recent meetings and on various listservs. GCAs job are available, and individuals are employed as GCAs around the country already, in laboratory and clinical settings. Like a para-legal to a lawyer, GCAs master administrative tasks and carry the burden of extra work that often sidelines the genetic counselor or reduces his or her efficiency – phone calls, paper work, records requests, insurance pre-certifications, initial intakes, and the like. The only way we are going to keep up with the demand for GC services is to increase efficiency for ourselves and free up genetic counselors from work that impedes their ability to serve all who need and are seeking their services.

 

  1. Evolve or die. We as a profession must figure out how the future of genomics will include us. To do this we must immerse ourselves in current issues – in the clinic, in the research world, in the spheres of business and government – and then speak up when the genetic counselor voice must be heard. Get involved in your state’s genetic counselors’ group (consider founding one if it doesn’t exist). Volunteer in groups and for projects of the National Society of Genetic Counselors. Develop a professional social media presence. I chose to involve myself in the NSGC Public Policy Committee, believing strongly that taking a stand on issues of policy that affect us as genetic counselors allows us to determine our profession’s destiny, not others. Every committee and special interest group and task force of the NSGC contributes important work to the genetic counseling profession, but none of that work happens unless individuals decide to take that step and get involved.

 

  1. Embrace the expansion of our professional opportunities, despite the shortage of genetic counselors to fill existing clinical and laboratory roles. GC’s are finding opportunities to do something new and different, which is fitting for a group who collectively are thinkers outside of boxes. For as long as the profession has existed, GCs have used creativity, ingenuity and chutzpah, trailblazing new roles out of necessity. In every city and in every specialty area, there was a “first” GC there. If you have been contemplating blazing your own trail, now might be a good time to test out the waters, to find your niche and try something you’ve been dreaming of.

 

There are role models for those looking for them, as GCs excel at identifying needs and making connections. We’re problem-solvers and sleuths, and we’re a resourceful bunch. From this, we have seen Bonnie Liebers develop Genetic Counseling Services, which creates specialized teams of genetic counselors for growing businesses who need them, utilizing a world-wide network of CGCs. A group of GCs recently published an article in the Journal of Genetic Counseling sharing their experiences working for startup companies. I recently launched my own solo venture, WatershedDNA, to provide consultations on ancestry and other home DNA tests, both privately and as a part of larger projects or for companies. The niche I found was filling a need for genetic genealogists, adult adoptees, the donor-conceived community and others, all of them looking for someone who understood the psycho-social dimensions and the science behind genetic testing for ancestry and ethnicity. A perfect role for a genetic counselor, and a match for my own natural interests and passion.

 

Currently, I work one-on-one with clients referred to me by the genetic genealogy community, mostly individuals who have already pursued a home DNA test or are considering it. Just as in a clinical setting, we begin with family history when available and identify a client’s goals and areas of concern. We review any results they already have and discuss additional testing options, and how they might affect them and family members, now and in the future. Working fee for service and owning my own business come with financial uncertainty and lots of unknowns, but it gives me other freedoms, including flexibility and the sense of adventure that comes with pursuing an entrepreneurial path (like my father and grandfather – genetics?). It isn’t easy; I’m a worrier by nature, and some days that Bunsen feels like it’s a-burnin’ hotter than usual. But like the genetic counseling profession as a whole, I’ve found myself in the midst of a crucible that isn’t trying to destroy me; it is providing me an opportunity. A chance to change and create, to extend the reach of genetic counselors. It will engender a future of great things, if I allow it.

 

Let’s be willing to face the uncertainty that the wild west of genetics brings, be daring, and embrace the shades of gray as we blaze new trails. None of us chose the profession of genetic counseling because we thought it would be easy.

 

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Guest Post: Sometimes It’s Okay To Fail

by Lisa Demers and Stephanie Snow

Stephanie Snow, MS, CGC has 11 years of prenatal genetic counseling experience. She worked as a clinical site coordinator and genetic counselor for the FASTER study and as a clinical research coordinator for the NEXT study. Lisa Demers, MS, LGC has 12 years of prenatal genetic counseling experience and currently works with Ariosa Diagnostics as a Medical Science Liaison.

The landscape of prenatal screening is changing. The use of non-invasive prenatal testing (NIPT) in clinical practice is already common and is being adopted quickly by generalist obstetricians and maternal fetal medicine specialists. While the cell-free DNA technology is innovative and the impact on patient care is significant, there is a rising chatter about NIPT failures – the 1-8% (depending on the company) of reports that return without a test result. This is a dual issue – there’s the underlying “annoyance” that NIPT occasionally fails to produce a result, and then there are publications suggesting an association between fetal aneuploidy and test failure. The latter is a conversation for another day.

Although these “no call” results frustrate patients and their doctors, the negativity surrounding these failures is surprising. The concept of a test failing is not new in medicine, and certainly not within prenatal medicine. Increasing rates of maternal obesity are just one reason for limited prenatal surveillance, with one study demonstrating that 41% or less of fetal survey ultrasounds on patients with a BMI of 30 or higher were able to be completed on the first try. When it comes to first trimester measurement of nuchal translucency (NT), the FASTER trial noted an overall 7.5% failure rate, either because of an inability to measure or due to inaccurate measurement. In a review of patients within one clinic, where nearly 50% of patients had a BMI over 25 and 25% had a BMI of 30 or more, 4% of patients had an NT failure on the first attempt and of those who opted for a second attempt, 18% failed. Overall in this population, 2.7% of patients did not achieve a NT measurement.

This is not to say that test failures are necessarily bad. When an NIPT test fails, it is often because quality metrics are in place to ensure proper test performance – just as there are standards for NT measurement which are established by the Fetal Medicine Foundation (FMF) and the Nuchal Translucency Quality Review (NTQR) program. An NT may “fail” because a patient presents for screening outside of the appropriate gestational age requirements or because of suboptimal fetal positioning. The nuchal translucency measurement is critical in obtaining aneuploidy risk assessment when combined with serum biochemistry, and even the slightest over or under estimation dramatically impacts clinical care. Such is the case with NIPT quality metrics. These metrics are in place to ensure appropriate risk assessment for the pregnancy, with the most important of these being fetal fraction. Fetal fraction is greatly affected by maternal weight, with obese women less likely having the required minimum concentration of fetal DNA in circulation. Here again, maternal obesity reduces our ability to accurately assess the well-being of a fetus.

In reality, any test failure rate can be a nuisance to a busy clinic. Having patients return for an additional visit is inconvenient to patient and provider alike. However, there are biological and technical reasons for at least some NIPT tests to fail. The thoughtful provider will consider the various metrics involved with the NIPT options and select one that balances high quality metrics (including fetal fraction) and low rate of technical failures.

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