Ethics and Religion Talk: DNA Privacy and Misuse of Information

A recent NPR story raises questions of DNA privacy. “The police currently [are] using [searches of public DNA databases] to find ... [murderers] and bad people. But are we OK with using this technique to identify people in a political demonstration who left their DNA behind?”

Public DNA databases can be used to identify a growing number of DNA samples, even if the person has never had DNA sequenced and registered; and investigators succeeded in using the same techniques to identify a woman whose DNA was stored anonymously in a National Institute of Heath database.

Does the potential for misuse of private information make the collection and storing of DNA samples a violation of ethics?

Fred Stella, the Pracharak (Outreach Minister) for the West Michigan Hindu Temple, responds:

“The way this question is phrased is of key importance. We are asked to comment on the ethics of the POTENTIAL of abuse of an innovation in the area of, say, crime solving. I do agree that the compromise of personal privacy is a possibility. But I do not see a violation of moral standards in the attempt to create a data base that may aid in police work yet seeks to uphold the rights of innocent people. It's all in the planning and execution of details.

“Not a perfect comparison, but the early inventors of the firearm might have had noble intentions of developing a tool for hunting and personal protection. I don't believe that because gun went on to be used for murder, genocide, conquest, etc. that we hold the inventors guilty of any great sin. Think of the negative impacts that the automobile, computer and television have had on many people. Just because the possibility of harm exists is not a reason to stifle scientific and technological growth.”

The Reverend Colleen Squires, minister at All Souls Community Church of West Michigan, a Unitarian Universalist Congregation, responds:

“The 7th Principle of Unitarian Universalism is the Respect for the interdependent web of all existence of which we are a part. This question regarding DNA commercial databases is an example of how we are all ultimately connected. The question also highlights once again that science is moving faster than our ethical and moral understanding of the ramifications of applying this science in various uses. If the science is used to convict or to clear an individual of a crime I think this is an ethical use of the database. When it connects somebody who had once asked for their samples to remain anonymous as in medical research subjects or for sperm or egg donors I think it is a breach of the original agreement. I think we have entered an age of discovery in science that will end the idea of an anonymous donation; we are indeed all connected.”

Rev. Ray Lanning, a retired minister of the Reformed Presbyterian Church of North America, responds:

“Everyone should be concerned about the potential for misuse of personal data of any kind. This horse is long since out of the barn, however. The right to privacy is fast eroding under the buffeting winds of the information age. Everyone with a device connected to the internet is supplying service providers with a very lucrative trove of personal information. It’s best to assume that almost anyone can find out almost anything about you, one way or another, as long as it’s out there in cyberspace.

“Those who exercise their right to peaceful protest should assume that intelligence-gathering agencies will want to know who they are. You should have the courage of your convictions. Count the potential cost, be willing to pay it, and then stand up and be counted.

“Anything you don’t want these agencies to know should not be filed in an accessible place. The only violation of ethics would be if the intelligence were gathered for a sinister or illegal purpose. Contractual promises of confidentiality can only be enforced by litigation. Mere legal prohibitions, like technological ‘firewalls,’ will only inspire inventive minds to find ways around them.”

Father Kevin Niehoff, O.P., a Dominican priest who serves as Adjutant Judicial Vicar, Diocese of Grand Rapids, responds:

“This question presupposes that we have any private information. We live in a world where nothing is private. Yes, the misuse of an individual’s information is never to be considered a good, but DNA, deoxyribonucleic acid, is the ‘new’ fingerprint and has been for a long time. Let us also remember that DNA research is not always for nefarious purposes.

“What is unclear about the ‘anonymous’ woman who was identified through a DNA search is if the woman chose to be anonymous or not? Regardless, there are many unanswered questions regarding DNA databases. Our information is always subject to misuse. Whether an individual’s DNA ought to be encrypted or not is a question our society needs to answer.”

This column answers questions of Ethics and Religion by submitting them to a multi-faith panel of spiritual leaders in the Grand Rapids area. We’d love to hear about the ordinary ethical questions that come up on the course of your day as well as any questions of religion that you’ve wondered about. Tell us how you resolved an ethical dilemma and see how members of the Ethics and Religion Talk panel would have handled the same situation. Please send your questions to [email protected].