We know that genealogical data can help save lives or prolong lives and improve the quality of life for many people. This will happen once the medical community uses our data to discover new cures for inherited conditions. Yet, are we also in danger of violating international conventions on medical research by supplying this data without the knowledge or approval of the human subjects involved? Are we violating the privacy of people with inherited medical conditions, including mental illness and other stigmatizing conditions?

If I release information about my great-great-grandparents who have been deceased for a century or more, am I also unwittingly giving personal medical information about all of my distant cousins who descend from these same ancestors? Potentially, I am giving away personal medical information about thousands of people, most of whom I have never met, nor do I know their names. Am I giving information that will someday be used by insurance companies to charge higher rates to my distant cousins because of their increased risk of inherited medical conditions? Could my distant relatives someday be denied medical care or education or employment or other opportunities because of inherited medical risk, based in part on the information I supplied? This could even happen to my own descendants, including those not yet born.

I do not know the answers to these questions. I’ll bet that you do not know, either. But I will suggest that it is time that we, the genealogists, start to wrestle with these issues.