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Diagnostics Future Tech

Are We Prepared for the Hard Choices?

dna_500From MIT:

The first noninvasive tests to reach the market have screened for the largest-scale genetic defects—namely, abnormal numbers of chromosomes. Sequenom Laboratories, Verinata Health (part of Illumina), Ariosa Diagnostics, and Natera all offer tests that look for trisomies—an extra copy of chromosomes 13, 18, or 21, which cause Patau syndrome, Edwards syndrome, and Down syndrome,

via Are We Prepared for the Hard Choices That Prenatal Genetic Tests Could Force on Expectant Parents? | MIT Technology Review.

“The truth, you want the truth? You can’t handle the truth!”

That seems to be the underlying concern in the linked article. It seems pre-natal genetic testing is getting better, faster, easier, safer and less expensive. As a result expectant parents can learn a lot, in fact a whole lot, about their child before he/she is born. They could learn that the child has a genetic disease or more troubling has the potential for disease.

If the unborn baby has a defect what do you do? There is no easy answer and the next step is even harder to answer. If the unborn child has genetic markers that indicate a potential for future disease what do you do?

Do we trust people to be smart and make decisions for themselves or do we intervene because some people might make decisions we disagree with? Can people be both pragmatic and moral?

Not long ago physicians would withhold information from patients for their own good? For example they would not tell a patient that he/she had been diagnosed with cancer. Now that strikes us as both wrong and absurd.

This issue is related to the underlying question “Who owns the data?” Does a person not have fundamental ownership in their own genome?

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