DNA testing confronts us with terrible responsibility

Dominika Osmolska Psy.D.'s picture
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Basic fetal DNA testing has been around for a while. First came amniocentesis – the extraction of a vial-full of amniotic fluid from a pregnant woman’s womb. Then came CVS (Chorionic Villus Sampling), the extraction of a sample of tissue surrounding the fetus, a more complicated procedure which, however, can be offered in the first trimester, thus affording parents information about the baby much earlier than the amnio. Both procedures are invasive, carry a small risk of miscarriage, for which reasons many of the more squeamish moms-to-be turn them down. Both tests are offered to women whose pregnancies are considered higher-risk, either due to advanced maternal age or a family history of genetic abnormalities. Many choose not to undergo the procedures because of the risk of miscarriage, or they do not want a very long needle inserted into the vicinity of their babies.

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But scientists now are on the brink of developing a genetic screening test which would require a simple blood draw from the mother, something she already undergoes routinely during pre-natal care. Industry experts are predicting the availability of such a test for the early detection of Down’s syndrome within the year. Although the screening is not available for any other condition, it is only reasonable to assume that they will follow. Genetic ethicists are beginning the complicated debate about the possible quandaries parents-to-be might find themselves in after submitting to the relatively benign and risk-free procedure.

At first glance early DNA screening via a simple blood draw might seem like a no-brainer: isn’t it an advantage to know as early as possible about the potential risks and challenges faced by the developing fetus? I am reminded here of a woman I knew who was obsessing about getting a CVS. Her primary locus of obsession was the EXACT risk of miscarriage. But upon further reflection, she realized this anxiety was displaced: what was really frightening her was the potential information she might face afterwards. In other words, she was anxious about what she might have to decide to do based on the results. Let’s say she did carry a fetus with Down’s syndrome. What was she going to DO about it?

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At least she was tormented by the specter of a painful responsibility, which is always the inevitable consequence of knowledge. Knowledge is power, yes, and knowledge calls upon us to practice our utmost responsibility – in this case, responsibility in relation to an entire future generation of human beings. This is the sort of breakthrough on par with the explosion of the first atomic bomb, which caused one of its chief architects, Robert Oppenheimer, to tremble face down in the dirt and utter, ‘Now I am become death, the destroyer of the worlds’.

The question is, are most of us up to the task of this great responsibility? Recent history tells me we are not. To continue the analogy from the atomic bomb, what happened within two decades of the first detonation? There began a proliferation of nuclear weapons so extreme that by the 1960’s we had enough of them to destroy the planet several times over. And rest assured that we are still yet to reap the full consequences of that race to madness.

There are parts of the world in which obstetricians refuse to tell parents the gender of the baby, which is easily detected on routine ultrasound, because of the high number of abortions on female fetuses. In other countries where the results are not kept secret, the female-fetus abortions are causing an actual gender bias in live birth rates, with male babies outnumbering female ones. Most of us here in the ‘developed’ world are appalled by such actions, but are we that different? The decision to abort a fetus which is judged to have a chromosomal abnormality, like Trisomy 18, ‘incompatible with life’ is seen generally in a compassionate light. And I doubt we will see parents wanting to abort a fetus whose eyes will be green, when they wanted blue. But the science of genetic testing will put us in a lot of gray areas. What if we are told the fetus has a 60% chance of developing lung cancer by age 45? Are we being selfish in continuing the pregnancy and possibly condemning a future middle aged woman to a slow, possibly agonizing death? Should we spare her the suffering by aborting her now? This is all assuming, of course, that she will come down with lung cancer in the first place…

The salient point here is that easy genetic screening will shift the burden of responsibility wholesale to the parents. A disease or condition in a child will no longer be something that ‘happens’ (an act of God, as insurance companies are fond of specifying naturally-occurring calamities) but something which could have been prevented. Parents who refuse to submit to the screening might be judged harshly when their children turn out, for example, to have autism. I can already see the uproar of voices calling for a refusal of public service money to be allocated to children of parents who were deemed ‘irresponsible.’

Who will be deemed the responsible one? Responsibility means: Liable to be required to give account, as of one's actions or of the discharge of a duty or trust. And also: Involving personal accountability or ability to act without guidance or superior authority. But most importantly, responsibility is the ability to be trusted or depended upon. From the perspective of that future 45-year-old woman coming down with lung cancer, who may or may not have lived a full and vibrant life (does it matter? Who are we to judge?), surely the ones who were able to respond with their utmost humanity, who said YES to her beating little heart, would have been her parents.

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Comments

If it turns out that the CNVs occur because of recent mate selection for people expressing cognitive traits derived from similar patches of DNA (inherited from a common ancestor) we could replace the damaged regions with only one parent's information (or at least restore the deletions and fix the doublings). The process would require sequencing the genome of a fertilized egg, repairing the missing patches on a computer, and resequencing the genome to return it to the egg (we already did this with a bacterium). Just a thought.