Posted By: Derek Scholes, ASHG Senior Director of Policy and Advocacy and Lyly Luhachack, Policy and Advocacy Assistant, ASHG
In the American Journal of Human Genetics this week, ASHG affirms its support for a woman’s right to make her own reproductive decisions, particularly upon learning that her fetus has a genetic or congenital disorder. The Society also articulates its support for laws that enable human fetal tissue research to proceed with appropriate oversight, within ethical guidelines and with informed donor consent. The ASHG Perspective highlights ASHG’s primary role as a research leader and its alliance on this topic with its core genetics and genomics clinical partners—the American College of Medical Genetics and Genomics and the National Society of Genetic Counselors.
With national movement on these topics in both federal and state legislative houses, the Society wants to make its views clear and to provide a resource to legislators with information from the genetics and genomics community. The paper is part of the Society’s ongoing ASHG Perspectives series, sharing ASHG views on topics including
- Advocating for Genetics and Genomics Research to Policymakers;
- Advancing Research and Privacy: Achievements, Challenges, and Core Principles;
- Prohibiting Genetic Discrimination to Promote Science, Health, and Fairness; and
- ASHG Denounces Attempts to Link Genetics and Racial Supremacy
Federal and State Statutes
A database developed by the National Human Genome Research Institute (NHGRI) to track state statutes reports that, for instance, 25 states have laws affecting the conduct of research and 41 have laws on genetic privacy. Genetic testing and reproductive choice has seen an increase in activity. The number of bills introduced during the 2019 and 2020 state legislative sessions far exceeds that seen in recent years and several have been enacted. Currently, eight states have enacted legislation to restrict abortion due to possible fetal abnormality, half of which were passed in 2019, although many remain enjoined by courts (where a court has blocked implementation of a law) or undergoing litigation review.
In 2013, North Dakota was the first state to enact such measures. While several other states have passed laws more recently, the North Dakota law remains the only law currently in effect. Indiana’s omnibus abortion law has been debated in the courts since it was passed in 2016 by then-Governor Mike Pence. Parts of the law prohibiting any person from performing an abortion “solely because the fetus has been diagnosed with Down syndrome” or “any other disability” were initially blocked by a district court judge, a decision upheld by the Seventh Circuit Court of Appeals. On May 28, 2019, the Supreme Court declined to review the lower court’s ruling. By refusing the case, the Supreme Court left the Seventh Circuit Court of Appeals’ decision intact— meaning that Indiana cannot implement those parts of the law.
Although the Supreme Court declined to review Indiana’s case on genetic abnormalities and selective abortion ban, it remains to be seen if they will do so in the future. Justice Clarence Thomas wrote, “…the Court will soon need to confront the constitutionality of laws like Indiana’s.”
Recently, Sen. James Inhofe (R-OK) and Rep. Ron Estes (R-KS) introduced S. 2745 and H.R. 4903 in their respective chambers. The two companion bills, Down Syndrome Discrimination by Abortion Prohibition Act, are similar in scope to state legislation that prohibit abortions due to prenatal diagnosis of Down syndrome.
The April 2 ASHG Perspective highlights the profound progress made to understand, diagnose and treat genetic disorders as well as the remaining difficulty many families face when they receive news of a fetal genetic abnormality. In recognizing that intensely difficult decision, the statement affirms that it is a decision that should remain with the woman and her family, consistent with ASHG’s positions as early as 1991. The ASHG Perspective also highlights the value of fully informed fetal tissue donation following abortion. Such donations facilitate the ethical use of fetal tissue in research to better understand treat and prevent genetic disorders across the lifespan, including Parkinson’s disease, cardiomyopathies, cystic fibrosis, retinal diseases and Alzheimer’s disease. In developing the statement, the ASHG leadership acknowledges that some members may have strongly held personal views, which it respects, even as the Society speaks broadly about the importance of decision-making by patients and research participants.
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