What About Personal Genomic Testing if You Are Adopted?

If you were adopted, you might have a hard time answering questions about medical history at the doctor’s office. Family history of diabetes? I don’t know. Cancer? Not sure. Heart disease? Alzheimer’s? Anything else that we should know about? Wish I knew.

Many adoptees are acutely aware that the absence of a family medical history can put them at a disadvantage. It may interfere with risk assessment and disease prevention, and adoptees may even feel a stigma as they move through the health care system.

As highlighted this week in the New York Times, personal genomic testing (PGT) may offer valuable information to fill in the gaps. Without that family history, however, adopted individuals will have little context to interpret the results of these genomic tests. This lack of context raises concerns: will reports of low genetic risk encourage reckless behavior? Will reports of elevated risk create unnecessary anxiety?

Wondering about these same questions, we examined responses of new PGT customers before and six months after they received their results. We recently published our results in the journal Genetics in Medicine.

Our study found that while personal genomic testing cannot replace a comprehensive family history, adoptees who received this information found it valuable — but that adoptees were no more or less likely than non-adoptees to seek additional medical advice or make behavioral changes based on their PGT findings.

Our study looked at a sample of 1,607 individuals, of whom 80 (5%) were adopted. The adoptees were more likely than the rest of the sample to cite their limited knowledge of family history and the chance to learn more about genetic risks as reasons they signed up for testing. Adoptees also wanted this information for family planning purposes, and to share with —> Read More

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