Privacy of Victim’s DNA

A recent case in San Francisco raised questions about genetic privacy that are worth considering. A woman’s DNA was taken from a rape kit and then used to identify her as a perpetrator in other crimes. This is a breach of privacy.

This piece will examine the situation, Secular ethicists AP cites, collection vs use, DNA as a degree of privacy, and DNA as part of who we are.

The Situation

AP Reported the details:

Woman doing medical research
A woman doing medical research (CC0 Unspalsh NCI)

This week’s revelation that the San Francisco police crime lab used a sexual assault victim’s DNA against her in an unrelated property crime case — and the allegation that it may be a common practice in California — has prompted a national outcry among law enforcement, legal experts, lawmakers and advocates.

Police investigators allegedly used a sexual assault victim’s DNA, collected as part of a rape kit in 2016, to tie her to a burglary in late 2021, according to District Attorney Chesa Boudin. The woman initially faced a felony property crime offense but the charges have since been dropped.

AP also interviewed and quote several secular / legal ethicists. A few say interesting things.

Chris Burbank and Sara Katsanis

“It’s absolutely unethical, there’s no question in my mind that it’s unethical,” said Chris Burbank, former Salt Lake City police chief who is now the Center for Policing Equity’s vice president of law enforcement strategy. “The question is not ‘Can we do that?’ The question should always be ‘Should we do that?’” […] “Bottom line: Victim DNA reference samples should never be used as criminal evidence.” […]

“Do we really need to have that written down in a law? Apparently we do,” said Sara Katsanis, a research assistant professor at the Northwestern Feinberg School of Medicine and the Genetics and Justice Laboratory’s principal investigator at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Burbank and Katasanis point out how this should be obvious. Victims would only approve the use of their DNA for that case. In fact, victims would be less likely to come forward if their DNA could be used for other uses. Often those who are victims of crime don’t have the cleanest past, but police should still encourage them to come forward without adding obstacles like this.

Chesa Boudin and Camille Cooper

Boudin said using rape victims’ DNA in unrelated investigations could be violating California’s Crime Victims Bill of Rights, which lays out that victims of a crime have the right “to have their property returned to them, to be fully informed of what’s happening with their property and to have it used only for the purpose that they’ve agreed to have it used.” […]

“Storing a survivor’s DNA in a database, or using it for any other purpose, is indefensible, and will discourage them from seeking medical care or reporting an assault,” Cooper said in a statement.

This points to the ethical issues of using DNA in this way.

Collection vs Use

A big issue in question around privacy is whether privacy is violated just at collection or also at use. We generally think of privacy violations most at collection, but we all implicitly recognize that using data given for another person for another purpose can be a violation of privacy. This is especially true if the second use is not authorized by the person the data is about.

Alan Westin notes three stages of private information where the dangers to privacy are different. He calls these, “Input, storage, and output.” (Privacy and Freedom, 324) Input and output could also be called as collection of data and use or analysis of data, respectively. A full understanding of privacy would seem to refer to all three stages, however, as the 3rd follows almost automatically from the first two, the control would most likely be exerted in those first two stages. Thus, the privacy of use or storage, not just of collection, matters.

When talking about genetic genealogy companies also offering diabetes testing, I noted this distinction less explicitly. The concern there was insurers but police using it would be similar.

However, the biggest worry I’d have is third parties who might be able to make decisions about you based on your DNA. Imagine if your health or life insurer realized you had a predisposition to diabetes. Would that mean your premiums would increase dramatically despite having no signs of the condition? Fortunately, “Most life insurers are restricted by state laws from using genetic information in the underwriting process, which protects genetic results as a form of private property.” However, in other states, it seems like once you know of a genetic risk, if you don’t disclose, the insurance company could theoretically not pay out death from diabetic complications claiming you didn’t disclose relevant data. (However, this later has yet to be tested legally.)

DNA as a Degree of Privacy

The more intimate something is to us, the more we need privacy over it. Our genes are some of the most intimate data about ourselves so far more privacy is needed.

I noted these relative degrees of privacy before:

When we think of intimacy, we obviously have many different levels from the totally public to the totally intimate. A person might share with the world that they sell new cars for a living; they might share with friends and coworkers that their numbers are down; but they might only share with their insecurities about this drop with their spouse; and the deepest level of concern for this is something they carry inside themselves. A person can tell their spouse that something makes them insecure, but we always have a level of what’s going on psychologically that any sharing of is always imperfect. Along with our psychology, our DNA is something that is unique and un-shareable. However, unlike psychology we now have an objective measuring stick. I might know that my dad and grandpa had skin cancer so I’m at high risk for this condition, but my DNA would tell me more precisely my level of risk.

Evidently, if our DNA is one of our most intimate aspects, it should have a large degree of privacy to avoid being used against our will. However, with these family tree databases, when a person decides to share this intimacy with the world, they also share a bit of what’s intimate to their extended family.

DNA and Human Dignity

I also wrote about how DNA is related to human dignity:

Two of the underlying problems with over-focus on DNA are philosophical. If we reduce humans to DNA, then we take out other aspects of who each of us is. First, if I am only my body, determined by DNA, then I lack a spiritual aspect. But it is our spiritual aspect, our soul, that gives us our human dignity above other animals. Second, if we say DNA causes many traits, people can forget the reality of human freedom. Human beings are free and responsible even if we each have predispositions (not predeterminations) to certain actions.

DNA testing does not necessarily result in either of these but can tend both ways. We need to avoid that danger whether we use them or not.

I’ve written a bunch more on these topics in my doctoral thesis but, I don’t want to quote it extensively when still incomplete.

Conclusion

We should be attentive to questions of storage and use with DNA samples. Victims’ DNA should only be used for their case, not other cases as that is what they reasonably consent to its collection for. If a police department wants to do otherwise, they should clearly explain it to each victim and get separate consent. This should be the law. Your DNA is an intimate part of ourselves so important for our dignity.

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