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Prenatal Diagnosis & Parental Choice

Debate has emerged over the ethics of prenatal diagnosis and reproductive freedom in instances where testing has revealed genetic abnormalities.

In the United States, many citizens agree that the government may impose limits on the freedom of individuals when individuals interfere with the rights of others, but the extent of these limits is often a topic of debate. Among the most debated of bioethical issues is the issue of abortion, which hinges on whether the fetus is a person with rights, notably the right to life.

The U.S. Supreme Court recognized a limited Constitutional right for a woman to choose an abortion in Roe v. Wade in 1973, only to eliminate that right nearly 50 years later in Dobbs v. Jackson’s Women’s Health Organization in 2022. The Dobbs decision places abortion rule-making in the hands of the U.S. Congress, which seems unlikely to reach a consensus any time soon, and the state legislatures, which are widely split on abortion issues. For example, in the first half of 2022, 11 states passed laws to protect or expand abortion care and 12 states enacted restrictions. In the first citizen vote after Dobbs, Kansans voted to retain a right to abortion.

As legislatures around the country continue to debate the scope of permissible abortions, it is clear that much attention will be paid to the issue of prenatal medical testing. At least two-thirds of diagnoses of Down syndrome lead to a decision to abort where that is permitted. Many states permit abortions where prenatal testing has revealed genetic testing abnormalities in fetuses, but several states have specifically prohibited abortions performed for the purpose of avoiding giving birth to a baby with Down syndrome.

In early 2023, more than 40 pro-life organizations wrote every Republican member of Congress to urge enactment of pro-life laws that would, among other things, prohibit abortions based solely on a diagnosis of Down Syndrome (the “Protecting Individuals with Down Syndrome Act”).

Those who oppose prenatal testing bans on abortion argue that laws based on intention or motivation to terminate a pregnancy would be unenforceable. “This is interference with a medical decision following a complicated diagnosis,” according to Kellie Copeland, executive director of NARAL Pro-Choice Ohio, “Not knowing the family and the circumstances, the legislature can’t possibly take into account all the factors involved.”

Supporters of the “Protecting Individuals with Down Syndrome Act” have described this as a way to limit the number of abortions and protect babies born with disabilities. Mike Gonidakis, president of Ohio Right to Life, stated, “We all want to be born perfect, but none of us are, and everyone has a right to live, perfect or not.”

In November 2022, the Court of Appeal in Britain ruled that the country’s Abortion Act that allows abortion up until birth for a fetus with Down Syndrome was legal and did not interfere with the rights of the living disabled. The plaintiff in the case, Heidi Crowter, who has the condition, complained that the decision “doesn’t respect my life.”

Teaching Note:

Bioethics examines the moral dimensions surrounding the use of medical technology, raising questions such as: Should all scientific advances in medicine be made available to all? Do some advances conflict with society’s values and morals? What role should the government play in the moral decision-making of individuals insofar and with respect to limiting or expanding choices available? These are broader questions to keep in mind while reading and discussing this case study.

 

Discussion Questions

  1. According to those opposing the legislation that would prevent abortion based on a diagnosis of Down Syndrome, what harm is done by limiting women’s freedom to terminate a pregnancy? According to supporters of the legislation, what is the harm done by not limiting women’s freedom to terminate a pregnancy?
  2. Who are all of the moral agents in this case? Who are the subjects of moral worth? Explain your reasoning.
  3. In some states it is likely that legislatures will act to provide the same protection that Roe v. Wade provided citizens for half a century. That decision held that first-trimester abortions are legal. Given that, is it ethically permissible to limit the freedom of women who do not wish to bear babies with birth defects if the diagnosis and the procedure take place in the first trimester? Why or why not?
  4. If it is legal to abort babies with disabilities like Down syndrome, what message does this convey about the value that society places on the lives of persons with disabilities?
  5. If Congress decides to criminalize abortion in cases where the motivation for abortion is a prenatal diagnosis of Down syndrome, does the Congress have an ethical responsibility to ensure that poor families are not driven into bankruptcy by the high medical and educational costs of raising children with disabilities? Why or why not?
  6. Should physicians be required to divulge the motivation for terminating a pregnancy? Do you think this is an ethically defensible reason to breach doctor-patient confidentiality? Explain your reasoning.
  7. Should parents have the freedom to decide whether to abort for other reasons, such as the discovery that the fetus will be born deaf or diabetic? In a free society, should the government limit the reproductive options of families who will be left with a financial, emotional, and physical burden as a result? Explain.
Moral Agent & Subject of Moral Worth

Moral Agent & Subject of Moral Worth

A moral agent is capable of acting with reference to right and wrong, and has the power to intentionally cause harm to another. A moral subject is anything that can be harmed.

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Bibliography

Prenatal diagnosis and selective abortion: a challenge to practice and policy
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1508970/

Baby conceived to provide cell transplant for his dying sister
http://www.nytimes.com/2000/10/04/science/04BLOO.html

The problem with an almost-perfect genetic world
http://www.nytimes.com/2005/11/20/weekinreview/the-problem-with-an-almostperfect-genetic-world.html

Ohio bill would ban abortion if Down syndrome is reason
http://www.nytimes.com/2015/08/23/us/ohio-bill-would-ban-abortion-if-down-syndrome-is-reason.html

First-Trimester or Second-Trimester Screening, or Both, for Down’s Syndrome
http://www.nejm.org/doi/full/10.1056/NEJMoa043693

Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995-2011)
http://onlinelibrary.wiley.com/doi/10.1002/pd.2910/abstract

Ethics Questions Arise as Genetic Testing of Embryos Increases
http://www.nytimes.com/2014/02/04/health/ethics-questions-arise-as-genetic-testing-of-embryos-increases.html

Wanting babies like themselves, some parents choose genetic defects
http://news.blogs.nytimes.com/2006/12/05/wanting-babies-like-themselves-some-parents-choose-genetic-defects/comment-page-6/

Prenatal whole-genome sequencing — is the quest to know a fetus’s future ethical?
http://www.nejm.org/doi/full/10.1056/NEJMp1215536

6 Policies That Anti-Abortion Leaders Expect a Pro-Life House Majority to Prioritize
https://www.dailysignal.com/2023/01/04/6-policies-that-anti-abortion-leaders-expect-a-pro-life-house-majority-to-prioritize/

Woman with Down’s Syndrome Loses Abortion Law Appeal
https://www.bbc.com/news/disability-63744073

State Policy Trends at Midyear 2022: With Roe About to Be Overturned, Some States Double Down on Abortion Restrictions
https://www.guttmacher.org/article/2022/06/state-policy-trends-midyear-2022-roe-about-be-overturned-some-states-double-down

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