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Reproductive Justice, Late Term Abortions, and Genetic Counselors’ Obligation to Speak Up

By Madison Granier

Abortion access is once again making headlines, but why is abortion access important to the field of genetic counseling?

On May 13, a genetic counselor, Jordan Brown, wrote about her experiences with the National Society of Genetic Counselors (NSGC) and the organization’s position statement on abortion.

In the article, “Not Ready to Make Nice: Juggling unabashed advocacy and NSGC’s insidious culture of ‘nice’ ” Brown calls out the NSGC’s lack of response and leadership for abortion access. 

“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.” – Jordan Brown

Brown’s article gained a lot of attention on #GCChat Twitter with many genetic counselors chiming in and expressing their support of the article.

The article also caught the attention of the NSGC whose president-elect tweeted the following:

A few months after Jordan’s blog post, the NSGC announced the newly formed NSGC Task Force on Reproductive Freedom, Access and Justice. The overall objective of the group is to, “Develop recommendations for key messages, resources and long-term strategy considerations for NSGC and member advocacy around genetic counseling and reproductive justice.” 

The Task Force Charter also notes:

“NSGC firmly believes that reproductive decisions should be made in the context of unbiased and comprehensive information, and seeks to provide support to members in advocating for their ability to provide such information to patients.”

Why is abortion important to the field of genetic counseling? 

Genetic counselors are uniquely qualified as healthcare professionals to speak up for access to abortions, reproductive justice, and healthcare for patients in general.

On May 17, 2021 the U.S. Supreme Court announced they will review the Mississippi ban on abortions after 15 weeks of pregnancy. In the last several months there have been waves of state laws aimed at limiting access to abortions, challenging the court ruling of 1973 Roe v. Wade. According to the Guttmacher Institute, “2021 will end up as the most damaging antiabortion state legislative session in a decade.”

Yet abortion access is an extremely important part of heath care. There are many reasons why someone may choose to end a pregnancy. The reasons someone would chose to have an abortion are personal and people should not have to justify their choices. 

An abortion is a safe and legal way to end a pregnancy.

  • 4 out of 10 women will get an abortion during their life. 
  • Less than 1% of all abortions occurred at 21 weeks or greater. 
  • 92.2% of abortions occurred at 13 weeks or less. 

However many people do not find out they are pregnant until late in the pregnancy. Often this will severely limit access to later term abortions due to state restrictions.

In a minority of cases, people might seek later term abortions due to fetal abnormalities, congenital defects, or health risk to the pregnant person. These complications will sometimes not be discovered until very late in a pregnancy. 

This is where abortion access and the profession of genetic counseling collide.

In the Patient Stories Podcast episode, “A Later Abortion Story” Erika and Garin discuss their pregnancy and their abortion story.

“The first trimester was perfectly normal. {…} the doctor called after [the CVS] and said ‘congratulations, you’re having a boy and everything looks great.’” –  Erika on Patient Stories

In the second trimester a blood test revealed AFP levels 4x the normal baseline. Such high AFP levels are correlated with bad outcomes in a pregnancy. 

Erika was referred to a maternal fetal medicine clinic. Months passed with numerous tests, exams, and appointments. Each test revealed another abnormality in the pregnancy. It wasn’t until early in the third trimester that Erika and Gain were told something was seriously wrong.

“We didn’t talk to a genetic counselor again until about 30 weeks.[..] She and I talked about the things it could be given the indications. […] She was like ‘it doesn’t seem like it will be a viable pregnancy. We won’t get the test back in time to really be able to make a decision about that. A lot of people in this situation, we refer them to Colorado’. And that was the first time someone had mentioned Colorado […] or abortion in general.”- Garin on Patient Stories

Erika and Garin’s situation is not uncommon. Many people might argue ‘why not do something earlier?’ or ‘why did you wait so long?’ Complications in a pregnancy may develop late in the pregnancy. In Erika’s experience, uncertainties kept popping up over time. It was not obvious there was a serious problem until she was over 30 weeks.

At this point the pregnancy, Erika was too far along for an abortion in New York. The couple had to fly to Colorado to end the pregnancy. After her experience, Erika became involved in abortion rights advocacy, specifically advocating for conversations about abortion to be part of obstetric care. Erika later talked about her work in MFM and reproductive health.

“I think it’s really important to have these conversations. […] The culture around obstetrics is still very much old-school. […] We are asking them to have tricky uncomfortable conversations with patients and some of whom, a provider might think, could be very offended by the conversation. It’s not a reason to not have that conversation though. I think we have to afford pregnant patients the dignity of all the information available.” – Erika on Patient Stories 

On the Genotypecast podcast episode,  “Later Abortions, Reproductive Justive, and Genetic Counselors’ Obligation to Speak Up,” Jordan Brown highlights how delays in prenatal testing or a diagnosis can jeopardize a person’s choice to have an abortion.

“It’s really important when we think about our patients. It’s really important because [genetic counselors] all know there are […] time sensitive aspects of genetic testing. But then there’s also the possibility that in some cases it just takes longer to get results or that different features are not noted until later on in a pregnancy. And at that point, a lot of women are past the time in their state where they would be able to have a legal abortion.” 

Genetic counselors are trained to help patients through grief and the decision process after an abnormal test result, exam, or genetic test. Genetic counselors often see patients who are far along in a pregnancy, and part of a genetic counselor’s responsibility is to provide patients with all their healthcare options and next steps. 

Katie Sagaser, a genetic counselor and an outspoken advocate for abortion rights and reproductive justice, took to twitter last fall to start a bigger conversation about reproductive justice, abortion, and the responsibility of genetic counselors to advocate for reproductive health.

What’s Next? 

The field of genetic counseling is rapidly growing and changing. More genetic counselors are speaking out about disparities and inequality in the healthcare system and genetics. Part of the growing conversation centers around reproductive justice (how socioeconomic status, gender, and race can affect reproductive healthcare) and abortion access. 

Abortion is a very important healthcare option and healthcare providers should be providing patients with all their options, even if talking about abortion may be uncomfortable.

Genetics professionals need to address abortion access, reproductive justice, and healthcare disparities. Healthcare providers have a platform, and we need to use it to advocate for our patients.

 

References & Further Reading:

Sister Song

Reproductive Justice For Black Lives

Dorothy Roberts. “Reproductive Justice, Not Just Rights.” Dissent. Fall 2015.

Abigail Abrams. “‘We Are Grabbing Our Own Microphones’: How Advocates of Reproductive Justice Stepped Into the Spotlight.” Time. November 21, 2019.

Loretta Ross. “The Color of Choice: White Supremacy and Reproductive Justice.” SisterSong. July 2016

Danielle M. Pacia. “Reproductive Rights vs. Reproductive Justice: Why the Difference Matters in Bioethics.” Bill of Health Harvard Law Blog. November 3, 2020. 

After Tiller. Documentary Film. 2013

A Later Abortion Story” Patient Stories Podcast

Later Abortions, Reproductive Justice, and Genetic Counselors’ Obligation to Speak Up” Genotypecast Podcast

 

Are you a genetics professional passionate about advocacy for reproductive justice? Consider joining the GENUINE Collective.

 

Do you meet genetic testing criteria for hereditary breast cancer risk?

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