Tag Archives: abortion

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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Summing Up the Consequences of Election 2016: 3 Things That Could Change the Practice of Genetic Counseling

It’s been two weeks, and everyone is sick of hot takes on Life in Trump’s America and What Is the Worst Thing That Could Happen? (um, I’m going with nuclear war, but take your pick). I know, I’m sick of it too. But elections have consequences, and, like climate scientists and immigration lawyers, we need to put some thought into what this could mean for our field.

 

The potential repeal of the Affordable Care Act is a concern for everyone working in health care, as is the threatened dismantling of Medicare. Possibly, critics of the ACA will discover that it is easier to campaign than to govern, and that voting to take away health care from tens of millions of people isn’t as much fun as it was in the good old days when they had the safety net of a presidential veto. But hey I’ve always been a Pollyanna. Too cheerful, that’s me.

 

Point one: prepare to practice in a climate where there is more inequality of access.

 

Chances are, prenatal genetics will be affected by an empowered and emboldened anti-abortion movement.   A president has some limited ability to make access to abortion more difficult through executive orders – President Bush signed regulations that gave everyone in the hospital, including orderlies and cleaning staff, the right to decline to do their job in cases involving abortion – but the main issue is the Supreme Court, where as president Trump will get an opportunity to redefine the balance of right and left if and when any of the reliable supporters of reproductive rights leaves the bench. Ruth Bader Ginsburg turns 84 on March 15th and I know millions of people join me in wishing her a happy birthday and many, many happy returns. The Court’s other octagenarian, Anthony Kennedy, has been behind decisions that chipped away at abortion rights, but has also declined several opportunities to overturn Roe v Wade, and anyone replacing him would almost certainly be more explicitly anti-abortion.

 

When asked last week on Sixty Minutes what would happen if Roe v Wade were overturned, Trump said that control of abortion law would then revert to the states, and that women who wanted an abortion might have to “go to another state.” This is correct (shocking but true) and you can make your own determination about the relative impact that would have on affluent and educated women  versus poor women, and teenagers, and other vulnerable parties.

 

The more complicated truth is that Roe v Wade is not going to disappear overnight, although there is a real and important long term threat. Should further changes create a Supreme Court majority ideologically opposed to abortion, they will have to wait until an appropriate case arises to make any changes. State lawmakers would no doubt be happy to present them with a test case, but making laws takes time, and then there are challenges and lower court decisions and demonstrations and pundits talking on the news before SCOTUS makes an actual decision. Even then, there is the hope that one or another of the anti-abortion faction hesitates to overturn 40+ years of precedent (See? You thought I was joking when I said I was an optimist).

 

A recent Supreme Court decision disallowing TRAP laws (targeted restriction of abortion providers) will stand, and so does the coalition that voided them, at least for now. For the moment, this should limit the chronic deterioration of access to abortion in Southern and Midwestern states that we have seen over the past decade. I believe it remains important to monitor changes that adversely affect our patients’ ability to obtain an abortion related to genetic findings, including decreased coverage, increased cost, logistical obstacles and changes that necessitate travel.

 

Point two: be vigilant about the threat to reproductive rights, but don’t expect dramatic changes in the near term.

 

Here’s something we don’t talk about enough: there is evidence to suggest that prenatal testing itself is likely to be a target of the anti-abortion movement. In fact, it already is. The National Conference of Catholic Bishops issued a directive in 2009 that forbids prenatal diagnosis “if undertaken with the intention of aborting an unborn child with a serious defect.” This decree limits the use of prenatal testing in some Catholic hospitals, a growing segment that includes one in six hospital beds in the country today. Many Catholic institutions including schools and hospitals refuse to pay for insurance plans that cover prenatal testing, restricting availability for all their employees, regardless of their own beliefs.  Other employers with an anti-abortion agenda could do the same thing.

 

More evidence that prenatal testing is on the radar screen of the anti-abortion movement: state laws have been advocated, and in two instances passed, that specifically forbid women from seeking a termination for reasons of genetic defect. These laws don’t get a lot of ink because they are a) unconstitutional (under Roe) and b) virtually impossible to enforce, since they require a prosecutor to prove motivation. This doesn’t mean they are not important. They were written by people whose agenda it is to limit abortion by any means, but they were chosen as a vehicle because they tap into a larger uneasiness about prenatal diagnosis.

 

The laws may not be enforceable, but they are chilling. Abortion is already medicine’s stepchild. Why would doctors or hospital administrators be eager to offer a procedure where they have to think twice about whether or not they could get in legal trouble? And the laws show an intent that could be more fully realized through other means. You may not be able to prove a woman’s intent in seeking an abortion, but you can certainly document a counselor’s intent if he or she offers the option of termination after a prenatal diagnosis. Will we see attempts to limit what can say to our patients? If this seems impossible to you, consider that 35 states currently have script laws detailing what a woman must be told before she can have an abortion, and a number of those require providers to give inaccurate and misleading information. In 6 states, women must be ‘informed’ that personhood begins at conception. In 5 states, women must be ‘informed’ that there is a link between abortion and breast cancer. If they can require us to lie to patients, don’t rule out the possibility that they can forbid us to speak.

 

Advances in prenatal testing are revolutionary.   NIPS is the fastest growing medical test in the history of medical tests. We will continue to see changes that widen the scope of what we can diagnose prenatally and improve our ability to predict outcomes more accurately, and at an earlier phase in pregnancy.  This is going to reduce the incidence of a whole range of genetic conditions — for those who use the  test. But improvements in prenatal diagnosis don’t improve access; in fact, improvements in prenatal diagnosis are fueling the debate over what types of prenatal testing are acceptable. If the courts and the politicians and the public don’t accept the idea that pregnant women have a right to prenatal testing as a part of normal prenatal care, then laws and limits to insurance reimbursement may put it out of reach of many Americans.

 

If prenatal testing is only available people who have enough money, or the right education, or live in certain parts of the country, it is not just unfair to individuals but fundamentally changes the societal impact of offering the tests. The necessary consequence of offering prenatal diagnosis and the option to choose only to some people, is that the birth of a child with a genetic defect or disease will gradually change from being something that can happen to anyone to something that only happens to ‘some people’. Don’t we already see this happening to some extent with Down syndrome? People are right to think hard about the potential consequences of prenatal diagnosis, but restricting prenatal testing so that access is unequal doesn’t limit the harm, it multiplies the harm.

 

Point three: we need to make the case that genetic testing is a part of good prenatal care and that every pregnant woman has a right to it, if she chooses.

 

There are other issues to consider but these three jump out at me as points of concern for genetic counseling practice as we move forward with a new administration. What can we do?  Hope for the best. Make our own spaces – schools, clinics, workplaces – into welcoming and inclusive environments for those who don’t feel safe in the current climate. Be vigilant, and bring changes that affect patient care to public attention. Talk to other counselors. Talk to me; I would love to hear your take and your stories.

 

 

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Hobby Lobby Sounds Like Fun But It’s Really Yucky Sucky for Genetic Counseling

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Hobby Lobby sure sounds like something that would never harm you. As Ray the Ghostbuster said in Ghostbusters, “Something I loved from childhood…something that could never ever possibly destroy us…”   But sadly, it is true: a threat wrapped in adorableness, Hobby Lobby v Sibelius is the 100’ tall Stay Puff Marshmallow Man of legal cases.

 

On March 25th, the Supreme Court of the United States heard arguments for and against the claim that Hobby Lobby, a privately-held company run by a family with conservative Christian beliefs, should not be compelled to purchase insurance for its employees that includes coverage for contraceptives, as is mandated under Obamacare. Actually the company does not object to all contraceptives, only to those that they consider abortifacients, including IUD’s and the morning after pill. Because this case concerns their right to act in accordance with religious ideology, the question of whether or not these methods actually produce an abortion is moot – it only matters that the owners of Hobby Lobby believe them to be wrong. So while the particulars of their faith mean that some contraceptives would still be available to Hobby Lobby employees, the principle under review, untethered to any burden of proof or objective standard, is far more sweeping.

 

Although the contraceptives issue itself is important, people on both sides have emphasized that this decision will have broader consequences. For instance, advocates for gay rights have seen this as a foot in the door for state-sanctioned discrimination, giving companies the right to refuse service or employment based on prejudice dressed up as religious beliefs. Adam Winkler, UCLA law professor writing in the Huffington Post, describes a number of ways that anti-discrimination laws could be undermined if any employer could claim a “religion-based objection to the law.”

 

This case is something that genetic counselors and the NSGC should be watching with concern, as it is likely to impact our field as well. Employers who object to paying for coverage that includes contraceptives may take a similarly skeptical view of paying for insurance that covers prenatal testing, with the reasoning that prenatal testing is done only to provide the opportunity for abortion. You can (and we will) argue that prenatal testing can lead to therapy or better case management or simple reassurance, but others will assert that the point of prenatal testing is to open the door for termination and, right or wrong, this is an argument that is likely to be taken seriously by conservative justices. If that seems crazy to you, do this thought experiment: imagine that termination is not an option under any circumstances, and then picture trying to get insurance companies to pay for amniocentesis.

 

Why do I think that anti-abortion advocates will target prenatal testing? it’s simple: they’ve been talking about it for years. Remember Rick Santorum, who was for a time one of the frontrunners to be the Republican presidential nominee in 2012? He made a speech during the campaign where he talked about the fact that prenatal testing is included as a fundamental and required part of healthcare coverage under Obamacare rules. “One of the mandates is they require free prenatal testing in every insurance policy in America. Why? Because it saves money in health care. Why? Because free prenatal testing ends up in more abortions and therefore less care that has to be done, because we cull the ranks of the disabled in our society.” This speech shocked a lot of people in the field when it hit the presses, but it didn’t shock his Christian Alliance audience at all. This doesn’t come from nowhere. Prenatal diagnosis is on the radar of the anti-abortion movement in the United States, which is why Hobby Lobby should be on ours.

 

Want more proof? How about the law passed in North Dakota last year, which prohibits abortion for sex selection or genetic defect? This statute has gone unchallenged in large part because it is almost impossible to enforce, as opposed to — say — the law restricting all abortions past six weeks gestation, which was passed at the same time and (understandably) got the lion’s share of the press. But the genetic abortion law, first of its kind, is a clear manifesto expressing the intention of those who oppose abortion to limit the ability of women to terminate for cause. And t that end, eliminating coverage for prenatal testing is a far more effective tool than trying to pass laws that require prosecutors to prove something about a woman’s state of mind.

 

This is an issue that isn’t going away. In fact, I predict it’s going to get worse. Why? Because we are getting better at what we do. Keep in mind that all our steps forward (better sensitivity, better specificity, earlier results, less invasive testing) are threatening to a mindset that sees prenatal diagnosis as an ever more efficient way to identify and eliminate vulnerable individuals. When ACOG revised its practice guidelines in 2007 to increase the number of women eligible for prenatal testing, columnist George Will wrote, “what is antiseptically called “screening” for Down syndrome is, much more often than not, a search-and-destroy mission…” Will, the father of a son with Down syndrome, bemoaned the change in practice precisely because it would be more effective.

 

I know, not because I am psychic, but because I have had this conversation before, what genetic counselors will say when this line of attack is launched. First, they will talk about their own commitment to be supportive of all choices for their patients, including the choice not to terminate, which is incredibly important to your patients but doesn’t matter at all to anti-abortion activists.  They don’t care if you are a good counselor, or a good person, since it doesn’t change the fact that a large percentage (how large; under dispute) of all those who receive a diagnosis of Down syndrome, for example, will choose to abort. Second, they will argue that prenatal testing has a value beyond the opportunity to terminate, which is true but a bit disingenuous for the same reason as above. Prenatal testing puts termination on the table as an option.

 

What I don’t like about this defensive posture is that it implies that giving families the option to terminate is not a good enough reason to do testing, or that we are unwilling to champion it as such. I don’t think this is how most counselors feel, but it is natural to try and tiptoe around the sensitivities of others, especially when those sensitivities are emotionally charged and involve a lot of judging – judging of us, and of our patients, whose feelings as well as medical options we would like to protect. But ultimately I think it is a better and stronger position to argue on behalf of what we do without defensiveness. We shouldn’t base our case for prenatal testing on the need to provide reassurance or how it improves prenatal care because those are not our best arguments and it makes us sound ashamed.

 

And meanwhile, stayed tuned on Hobby Lobby, where a decision is expected in early June.

 

 

 

 

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