1) Does the fact that the knowledge was acquired accidentally as part of a resea
ID: 457945 • Letter: 1
Question
1) Does the fact that the knowledge was acquired accidentally as part of a research program and not at the request of the individuals relieve the investigators of any obligation to inform the test subjects of any genetic discoveries about them?
2) Could Dr. Gress' position be considered paternalistic? If so, how might we recommend that the genetic information about individual patients be handled?
Please substantiate your responses referencing applicable ethical concepts, principles, perspectives and/or theories.
A Duty to Tell or to Remain Silent? "Dr. Cress, two of the people we tested for heart disease also turned out positive for the APOe gene," Clara Chang said "Do we have an obligation to notify them that they are at risk of developing Alzheimer's?" "Absolutely not,"Charles Cress said. "We have an obligation not notify them. What good would it do for them to know- they're at risk for a disease that can't be prevented and can't be treated? It would only cause them distress and unhappiness,"Explanation / Answer
Any single genome is probable to reveal vital genetic information & its medical implications. In today’s technology advancements in the field of genetics, genome science is still in its embryonic stage, and the amount of knowledge we have about the correlation between genetic data and human disease is nothing as compared to the amount we don’t yet know. Each gene which infers to the disease has many variants, and it is impossible to confirm with cent percent accuracy that what disease each genetic reading (analytically and clinically) will result to.
Investigators have an obligation to reveal the same only if:
There is high probability of benefit to the subjects
Available scientific evidence that the genetic information is linked to the severe disease
There is a specific medical action clinically effective to mitigate the risk
100% accuracy of the data inference
As none of the above are affirmative, investigators shouldn’t inform the individuals about the same
Providing detailed information may be arduous and useless & lead to ambiguities about whether particular studies are consistent with the exact description applicants were given. The data dealt with and the information got, is nowhere benefitting the investigators, but only the inference of the already known reference study, has brought to the supposition. Dr. Gress is not paternalistic, but ethically accurate, as no information is hidden here, but only the inference, which is not 100% supported analytically and clinically.
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