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Improvements in Prenatal Genetic Testing Raise Ethical Issues
R. J. Crayton   Oct 10, 2013   Ethical Technology  

A new study spearheaded at Columbia University aims to provide parents with more information about their unborn children—including potential abnormalities and genetic defects. Spread across 10 different research hospitals that plan to secure 1,000 women each to participate, knowledge gained from the study will contribute to the ethical dialogue surrounding what parents do with more prenatal testing data.

This new study raises the question of whether more data about the unborn is better. As technology has expanded the prenatal testing options, the ethical dilemmas surrounding genetic testing have blossomed. The primary dilemmas are whether it is ethical to abort just because a child has a genetic defect. If that path is chosen, how severe does the defect need be to justify abortion. Conversely, parents must decide whether it is moral to continue a pregnancy for a child who will live a life severely disabled or in pain, and one that could financially tax the parents.

Old Notions vs. Modern Sensibilities

While technology has ramped up what parents can learn prenatally, the issue of terminating pregnancies considered “abnormal” or “defective” has been around for some time. In an article for the Atlantic, Daniel Williams, an associate professor of history at the University of West Georgia, notes:

"The belief that women should have the right to terminate pregnancies in which they suspected fetal deformities predated ultrasounds and prenatal testing.

Those medical technologies certainly facilitated abortions, but the relationship between suspected fetal deformity and abortion preceded those tests by several decades ... concerns about fetal deformity were driving the debate over abortion legalization even in the early 1960s, several years before ultrasounds were introduced."

"...While the notion of abnormalities as a reason for pregnancy termination are old, the debate has changed as the world has become modernized. Today’s disability advocates contend aborting a child because of disability discriminates unduly against the disabled. “The increased use of unnecessary tests will further perpetuate the unfounded societal belief that these tests are necessary to produce a healthy child and may subsequently perpetuate ignorance and discrimination toward the disabled community...”

wrote Peter Chipman in The Moral Implications of Prenatal Genetic Testing.

In that same article, Chipman notes that people who choose to abort often base their decisions on their perceptions of disability rather than the realities of disability. “It is only through consultation with the disabled community that the true quality of life associated with the disease may be assessed and a decision about whether or not to allow screening can be made. If individuals with the disorder cannot communicate the degree of their quality of life,12 then the decision may pass to the parent, geneticist or obstetrician where a consensus can be made.”

‚ÄčAlso, the issue becomes thorny because some parents feel adamant that they won’t go through with an abortion. Yet, doctors say, many parents don’t really know what they’ll do until the time comes. In a New York Times article on genetic testing, Dr. John Larsen said, "People will come into my office in tears and say they've been against abortion their whole lives, but they'll make an exception for themselves."

Technology Blurs Lines

In the past, whether to abort has been squarely the decision of the couple involved. However, technology allowing for in vitro fertilization and surrogacy have blurred these lines. Earlier this year, news spread that a Connecticut couple’s surrogate refused to abort a fetus prenatally diagnosed with severe disabilities. The surrogacy contract required the surrogate to abort if there were genetic defects, but the surrogate believed abortion was morally wrong. She fled to a state that wouldn’t enforce the surrogacy contract. The issue was legally sticky because only one party was genetically related to the child. The surrogate was unrelated; the wife had used a donated egg to combine with her husband’s sperm (the one genetically related party). After the child was born, she was diagnosed with a cleft palate, brain cysts and a severe heart defect that would require several surgeries to fix. The court determined only the husband had parental rights, which he renounced, and the child was given up for adoption.

While the courts had to get involved to sort out the Connecticut situation, legislators in North Dakota have taken an active role in dictating what parents can (or more precisely, can’t) do with prenatal genetic data. The state became the first to ban abortions based on genetic testing. In September, a judge dismissed the challenge to that law, making the state the only one to legislate how parents can use genetic test data. Interestingly, proponents of the law would like it strengthened, as they note there is no requirement for doctors to ask patients why they are having an abortion. Therefore, the law lacks any real teeth, so long as parents don’t admit the reason they want an abortion is because of genetic testing information.

Accuracy Counts

One point those opposed to terminating pregnancies based on genetic testing note is that genetic testing often has nebulous results. The tests often require additional, more invasive testing to determine if there really disability. Other times, there is no additional testing available, and the results simply indicate a stronger likelihood -- rather than a certainty -- of disability. That’s one reason the doctors mentioned at the beginning of this piece are undertaking this study.

“When we counsel parents now, we can give them only limited information, drawn from what we know about children who have undergone genetic testing. But these children often represent the severe end of the spectrum,” said Dr. Ronald Wapner, principal investigator for the study. “There might be people who, because they had no symptoms, were never identified as having a variance, limiting the prognostic information we are able to give parents.”

So, parents could have aborted a child based on test results that were inexact. And frankly, while the issue raises concerns among ethicists and advocates, the people involved in the decision-making process overwhelmingly (70-85 percent) decide to abort when they receive a prenatal diagnosis of severe disability, according to a 2012 review.

“While the majority of abnormalities found with microarray are associated with known conditions, in many cases the full implications of findings are not well understood, and about 1.5 percent are unidentified. The goal is to fill in these knowledge gaps,” said Wapner, who is also director of reproductive genetics at NewYork-Presbyterian Hospital/Columbia. “Ours is the only study of its kind that is identifying genetic variances in utero and following the kids over time to see how the abnormalities present and to gather as much clinical information about them as possible, such as the severity of problems and life expectancy.”

While there are certain ethical issues that come alongside increased genetic testing, I think a study like Wapner’s is a good thing. Adding more certainty to the mix can only help parents make a truly informed choice in a difficult situation.

R.J. Crayton is a novelist living in the Washington, DC, metropolitan area. More information is available on her website.



COMMENTS

The objections to abortion based on genetic testing are based
on a premise that many readers would reject if they considered
it directly: that women are in some circumstances incubators
and should be forced to gestate.

Giving birth to a person with handicaps is harming and wronging that
person, but choosing not to give birth wrongs no one.  A fetus is not
yet a human being, and if it never becomes a human being, it never
acquires rights.

The North Dakota law is an example of the sort of injustice that
results from restricting abortion.  If it were given “teeth”, it would
bite many women irreparably.

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