Blog note: As in the days of Noah. All flesh was corrupted. Only Noah was perfect in his generation (not genetic corruption). End of note.
Congrats on the new baby. Want to screen your baby’s DNA? Part Three in a Series.
By Susan Scutti, CNN. Updated 9:23 AM ET, Sun January 6, 2019
What ethical issues guide newborn genetic screening?
One such harm, as envisioned by Beggs, would be false predictions of disease based on findings in a newborn’s DNA.
We might be causing unnecessary anxiety and stress if it turns out they’re not going to get [the disease] after all,” said Beggs. The wrong genetic forecast could also lead to unnecessary medical testing, which would have an economic impact and might involve medical risk. For example, a doctor could order a biopsy and the patient could have a bad response to anesthesia or the procedure.
“The risks on a per-patient basis are extremely tiny, but if you were to scale this to millions of babies, then there would probably be an occasional bad outcome,” Beggs said. “Are there enough good outcomes and benefits to outweigh the potential for an occasional bad outcome?”
Jeantine E. Lunshof, a philosopher and ethics collaborator in the Church lab at Harvard Medical School and an assistant professor at the University of Groningen in The Netherlands, told CNN in an email that genetic screening of newborn children “differs significantly” from genetic diagnostic testing in a sick child, where researchers look at only a part of the genome for a specific mutation known to cause symptoms or a disease.
One of the “key ethical issues” when using genome sequencing as a screening tool in newborns (or children in general), she wrote, “is that a comprehensive genetic profile is established without the person’s consent and without a clinical indication. However, this is a thorny issue, as parents decide all sorts of very important things for their children that sometimes have lasting consequences.”
“The issue with genetic information is, that once generated, it cannot be made ‘undone,’ ” wrote Lunshof, who was not involved in Beggs’ study. “If genetic information (that is often probabilistic) is on file, will it be used similar to ‘existing disorders’ and lead to denial of health insurance coverage?”
Both the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information and Non-Discrimination Act (GINA) offer some protections. Medical record privacy was enhanced under HIPAA, while GINA prohibits health insurance companies from using genetic information to make coverage decisions. However, GINA does not cover life insurance or long-term care or disability insurance.
Lunshof explained that when genetic screening is offered to adults, there’s an “ethical requirement of informed consent. Adults can weigh the benefits and disadvantages and consider issues of privacy and access to their data. A newborn cannot provide informed consent so it’s “more difficult to ethically justify the screening of babies and children,” she said.
Dr. Cynthia M. Powell, a professor of pediatrics and genetics and director of the Medical Genetics Residency Program at The University of North Carolina at Chapel Hill, said, “We could be taking away that child’s autonomy to decide for themselves when they are older whether or not they want this information. The other ethical issue is taking away that child’s right to an open future.”