Genome sequencing creates ethical dilemas

by Mike Heral

In simpler times, parents faced one neonatal choice: whether or not to know the baby’s sex. Since then, science advanced and now whole genome sequencing allows expecting parents to look into their unborn child’s DNA. Prenatal WGS depends entirely on ethical beliefs. A WGS study offers parents the choice to either abort or continue the pregnancy.

WGS first came to light in 2003, when scientists used it to map the human genome at a cost of $2.7 billion. Today, WGS costs $7,500, and prices are decreasing. Basic economics state an item becomes more popular as it becomes cheaper. The science is seductive, promising a healthier society, but there’s a trade-off. Irrevocable decisions must be made based on probability. Life deserves more than percentage points and a roll of the dice.

WGS has already saved lives. In August, it led to the identification of genetic defects in twins, who are now healthy. Scientists are anxious to make WGS available to expecting parents in hopes of increasing fetal genetic deformity detection. Proponents say with WGS, occurrences of cancer, diabetes, autism and Alzheimer’s disease will be reduced, if not eliminated outright.

Currently, prospective parents are offered Down syndrome screenings, which have resulted in the termination of nine out of 10 Down syndrome pregnancies. Those prospective parents might have determined death preferable to a child living what the adults considered an unhappy life.

In addition, WGS yields new ethical dilemmas. For example, my wife developed leukemia shortly following the birth of our second child. It killed her 16 months following diagnosis. In a cruel coincidence, my son developed leukemia 17 years later. Leukemia is nonhereditary, but some diseases are passed from birth parent to child.

If the government were to mandate universal in utero testing and a baby is born with a predisposition to a malady suspected to be genetic—let’s say Parkinson’s disease—what obligation would he or she have to notify a future lover they carry something potentially lethal? It’s not a far cry from an HIV-positive individual having sex with another person without letting them know about their status. In fact, 32 states have HIV-specific criminal laws.

The logical extension is for government to expand this law to prosecute parents passing mortal mutations to their children.

What if WGS predicts the parent will suffer an early death from a nonhereditary condition? Does the individual have an obligation to tell their partner there’s a strong chance they could die while their offspring is young?

A child’s death is never easy, but what if the government determines WGS-supported abortions are in society’s best interest? It’s not that far-fetched. State and federal governments acted with health in mind when they went after Big Tobacco. New York City Mayor Michael Bloomberg struck the next blow, outlawing sugary sodas from being sold in any size larger than 16 ounces. The government is tired of paying health care bills for preventable illness, even if it curtails consumer rights in the process. The groundwork is already laid to decide public good trumps individual reproductive rights—not that our government needs to push anyone off the abortion cliff. Remember the statistic stating women ended nine out of 10 pregnancies after Down syndrome detection? Those parents determined lifelong disorders are too much to bear. Government needs only to extend the logic to include WGS.

What potential for misery is enough to decide life is not worth living: a 30 percent risk of ovarian cancer, a 50 percent propensity to develop cerebral palsy or a 75 percent chance of severe bipolar disorder? Forget the cost to society for a second and put yourself in the shoes of a child born with a hyperactive pituitary gland. Is it ethical to place an innocent child in that environment?

My son’s cancer struck at the moment he should’ve been able to spread his wings and begin discovering his real identity. Instead, he’s faced emaciation, severe joint pain and at least two brushes with death. Few 19-year-olds think about life’s precariousness. Fewer understand real suffering. It’s natural for a child placed in a prolonged struggle to want to give up. It’s expected they’d rail at their parents for bearing him or her into a world of misery.

For the purpose of this article, I asked my son if he ever wished he hadn’t been born or if he would terminate a child with a WGS indicating an overwhelming propensity to develop cancer.

His answer should resonate in the minds of those who feel their fetus shouldn’t be subjected to hardship. He wouldn’t because there’s always a chance for survival.

Life is worth living, no matter what the results of a scientific test reveals.

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