Author Archives: dnaexchangeguest

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 8, 2022 · 8:00 AM

Guest Post: Reproductive Rights: When the Intent is Advocacy but the Impact is Exclusion / By Liann Jimmons

Author bio: Liann Jimmons is a public health and pediatric genetic counselor whose work focuses on increasing access to genetic services for patients, and increasing access to the profession for future genetic counselors from historically excluded and exploited backgrounds. She is an active member and mentor in the Minority Genetic Professionals Network, Vice Chair of the NSGC Equity and Inclusion Implementation subcommittee, and a member of the NSGC Podcast subcommittee. Her work is driven by her personal experiences as a Black, Vietnamese, disabled, queer woman. 

More and more genetic counselors have taken to social media, especially Twitter, to share their thoughts on incidences of injustice. Most recently, the Roe v. Wade overturn sparked impassioned conversation surrounding reproductive rights. In their defense of abortion, some genetic counselors consciously or unconsciously reminded everyone of the problematic foundations of this profession which grew out of the ideals of cisgender, heterosexual, non-disabled, nuclear white families.

“It’s just social media, don’t take it so seriously.”

“It’s just social media, no one should take me seriously.”

Both statements most of us have either heard or said before and there was a time where they carried more truth. However, it is willfully ignorant and irresponsible to insist either are still accurate assessments of the impact of social media. Genetic counselors from historically excluded and exploited backgrounds have repeatedly explained how suppositional intentions are not enough to excuse impacts of tangible, enduring harm. Yet, the “unintentionally” ableist, racist, homophobic, transphobic, classist, etc. ideas prevail both on- and offline

After the overturn, #GeneChat was filled with immeasurable sadness and anger at this attack on bodily autonomy and privacy. However, too many were thoughtless when naming whose bodies deserved autonomy and privacy. Woman this, women that, sisters, mothers, aunties, girls, ladies, daughters, wives. Genetic counselors too loudly reminded everyone that this field was built for and by cishet women. Our trans, nonbinary, queer, and gender expansive colleagues, future colleagues, and patients deserved to feel seen, respected, cared for, and safe. But they were effectively excluded.

Shamefully abundant were posts by genetic counselors grieving over the potentially disabled children forced onto the world, reeking of the rotten roots of eugenics in this field. These posts implied disabled folks are inherently unwanted, unloved, and will be unable to live meaningful, fulfilling lives. Disabilities, visible and invisible, are all around us, your colleagues included. The grieving I’m doing is for the patients harmed by their own provider’s ableism. And I grieve for myself and other disabled genetic counselors being told we are less than.

In addition, there were many posts implying all pregnancies conceived from sexual violence should be terminated, from reducing them to reminders of their parents’ trauma to the hypothetical negative impact on society, with one post describing unwanted children as destined to become criminals because they are poor and abused. Pedestaling abortion as solution these greater societal disparities is an example of white feminism. These ideas are coded in racism and classism, and lead to poorer outcomes in already marginalized communities. This is what happens when advocacy is not intersectional.

My simple ask, please be mindful of language on public platforms to avoid unintentionally sending messages favoring eugenics.

Genetic counselors’ intent is not enough anymore and it hasn’t been for a long time. Excuses like, “It was a mistake because… we forgot, we weren’t thinking, it was in the heat of the moment, we’re still learning, we didn’t know, etc.,” send the message, “We forget about or don’t think of people not like us. Our instincts are to protect ourselves and those like us. We have not put in the effort to learn about people not like us.” To effectively address mistakes and prevent them from happening again, learn how to self-reflect and simply apologize without the if’s, and’s, but’s, because’s, or well actually’s.

The rhetoric used in this discussion of reproductive rights triggered a larger, much needed conversation about the language we use in public spaces. Some people may read this and feel overwhelmed, but consider the marginalized folks who can’t not think about these issues because these are our lived experiences. Lastly, a reminder: if there is too much to consider or you don’t feel informed enough, you always have the choice to simply not post.

Since such a small percentage of genetic counselors are even on social media, one might think that our words matter less. In reality, it’s the opposite. To outsiders, the small sliver of our community they’re able to find is interpreted as representative of the whole. If you choose to participate in these spaces identifiable as a genetic counselor, please be more responsible and inclusive in your statements for the sake of us within the profession, those who will enter, and those we serve.

Author’s Note: While I originally was moved to write this piece to advocate for patients, specifically inclusivity in conversations about reproductive rights, I could not speak about the harm exclusivity causes to patients without acknowledging how exclusive practices harm and weaken the genetic counseling community from within. We cannot bring about justice for those we serve or ourselves without fully surrendering the idea that GCs are the exception and completely embracing the painful self-reflection that shows, as a field, we may not always be as progressive as we think. Being thoughtful about our language and inclusivity is just as important for the safety of our patients as it is for each of us. 

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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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by | November 30, 2020 · 4:58 PM

Bias In The Genetic Counseling Profession: Reimagining The Certification Exam

By Sarah Hopkins

Sarah Hopkins, MS, CGC works as a genetic counselor in a bleeding disorder clinic in NYC. She also works as a project coordinator for a COVID19 biobank. On Twitter @SarahGenetics

It has been observed for decades that genetic counseling is an overwhelmingly white profession. The profession has been sensitive to this, and organization leaders have endeavored to eliminate bias and reduce barriers to the field. In particular, it’s been recognized that the Board exam has biased questions. Unlike in nursing or medicine, however, we don’t know whether our Board pass rates vary by ethnicity because those data are not collected.

Standardized testing has disadvantaged people of color in numerous fields of testing since the early 1900s. Among the founders of standardized testing was Princeton psychologist and eugenicist Carl Brigham, who wrote that the SAT would help prove the superiority of the white race and prevent “the infiltration of white blood into the Negro.” Standardized tests helped place US soldiers in units segregated by race and test score. Test scores have repeatedly been shown to predict the test taker’s race and wealth, and not clinical competence. Civil rights lawsuits on behalf of people of color and students with disabilities have challenged the use of standardized testing in undergraduate and graduate admissions, as well as in certification in other professions.

Educational institutions have been dropping the tests, even more so during the pandemic. While Board certification is required by states that grant licensure, and most employers require it, that doesn’t mean the Boards must continue in their current form.

Genetic counselors have devoted years of practice analyses and committee work towards removing bias in Board questions, and yet ethnic stereotyping persists. Racism continues through unconscious and unquestioned assumptions. I just learned from an MTV video, of all places, that the term “Caucasian,” which we genetic counselors are among the last groups to use, is outdated and absurd. The Boards continue to be no more enlightened than I am. The exam I took featured a question with a Chinese American family silently refusing to discuss their shame surrounding a genetic condition.  Another question described an “East Indian family,” a eurocentric term best abandoned along with Caucasian. The East Indian couple features a husband making all the decisions while the wife sits silently. The only woman in the exam who has children with more than one partner is Hispanic. Inherited genetic conditions in the exam are “common in Jewish communities because of arranged marriages.” One question asks about the use of interpreters and assumes you, the genetic counselor, are fluent only in English, and not, say, Mandarin.

Many, if not most genetic counselors are concerned with the lack of diversity in the field, about inequity in recruitment, admission, curriculum, hiring and promotion. We podcast and blog about it, we tweet and post, we meet virtually and in person. But trying to eliminate bias in multiple choice exams ignores the original mistake of using these exams in the first place. We’re rearranging deck chairs on the Titanic.

Multiple choice tests do not lend themselves to the subtlety that is required in clinical practice. Patients don’t present with five choices. If we want to ensure graduates are ready to practice, then we should use open-ended questions. Internist and essayist Danielle Ofri recommends that physician recertification be open-book, and not timed. She argues that open-book tests would mimic real life, that in clinical practice, memorization of facts alone is insufficient. We look things up and consult colleagues. Relying solely on memory, she writes, amounts to malpractice.

Open-ended questions are also preferable to multiple choice because they easily allow for change. We’ll change our minds in one year, five years, ten years about which test to order, how we refer to an ethnic group, the way we approach a diagnosis. Multiple choice tests don’t allow the kind of nimble approach we need as our practice changes. When we cling to a multiple choice exam to confer certification on genetic counselors, we are putting ourselves at the mercy of the testing industry. We are not allowing for inevitable change in a field that changes more quickly than most.

Exam questions could be written by a required number of genetic counselors who are from underrepresented ethnic groups. The Boards could be graded by genetic counselors, using an agreed-upon rubric developed by experts in each area. Graders could be awarded continuing education credits for their work. Pass rates should be reported by ethnic groups, perhaps over a three-year period, to enhance anonymity.

The challenges we face with the pandemic, coupled with the imperative to address systemic racism provide an opening to imagine a new approach to certification. We should dispense with a testing method that has never served our profession well. Next stop: diversifying graduate admissions.

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