Privacy Issues Plague DTC Genetic Newborn Screening, Experts Say

Privacy Issues Plague DTC Genetic Newborn Screening, Experts Say

A number of experts recently raised their concerns on direct-to-consumer (DTC) genetic newborn screening and called against its use.

Experts such as Lainie Friedman Ross, M.D., Ph.D., FAAP, say that one of her concerns is the ethical issue of revealing children’s risk factors that will not present until adulthood to their parents without their permission. Ross says that this removes the right to privacy of these children, as adults, regarding their health information. She adds that a DTC company can also indefinitely own or sell any sample it collects.

Aside from this, it has been said that DTC screening is mostly inaccurate. Companies also typically test only the most common variants of a disease, and false negatives or positives also carry their own risks and consequences.

Source: AAP Publications

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