Ethical Quagmire of DNA Testing

In an editorial entitled “DNA Standards” in the December 2013 issue of the National Genealogical Society Quarterly Melinde Lutz Byrne and Thomas W. Jones lament:

When genealogists began to apply DNA test results to family history, they had the opportunity and responsibility to set standards—not for laboratory procedures, but for acceptable linkages to individual documentation, ethics, and interpretations. It was an opportunity missed. Had they been established, such standards would have set boundaries to embrace the power of genetic testing and, the same time, to avoid abuse. As difficult as it is to cite, describe, explain, or utilize this rapidly evolving tool, the real DNA-test quagmire is ethical.

Byrne and Jones raise important questions: 

With no established standards, editors face a conundrum when considering articles from DNA-test participants. Do they publish results that might affect relatives who have not released rights? When a DNA profile becomes as easily recognizable as a cursive signature, who has what rights?

However their implication that genealogists, by being more proactive, could have influenced the practice of DNA identification in the criminal justice system seems far fetched. 

The editors acknowledge that "widespread understanding of the capabilities and limitations of DNA testing lags behind technological advances." This pattern has been repeated over and over again with all technologies probably going back to the appropriate use of clubs in the age of the cave clans. Was it OK to use it on game? Was it OK to use it for self defense? To control others?

In more recent times the Internet developed far faster than our abilities to anticipate and understand how it should be used. In the last quarter century, no areas of science and technology have expanded faster than the Internet with the possible exceptions of astronomy and genetics. It is not in our ability or interest to try to stop these developments while we figure it all out. None of us have the ability to anticipate all the possible implications of developments in these fields. If we were that clairvoyant, we would be frozen into inaction by all the possibilities. But I suppose that inaction has occurred anyway.

Ethical behavior in the application of genetics to family history research and to health related endeavors is no simple undertaking. It involves balancing the:

1. right to know;
2. right to privacy;
3. right to own and benefit from intellectual property; and
4. right to protect our communities.

Should NGS have a role is discussing and providing guidance in appropriate practice? Should ISOGG? You bet!