Apr 05 2019

Ethical Issues Around Investigative Genealogy

Craig Klugman, a Bioethicist at DePaul University details the issues surrounding commercial DNA databases and using these databases for investigative genealogy purposes, and offers some paths forward.

Transcript:

Laura: Hi, we’re here at ISHI 29 with Craig Klugman. Craig, tell us a little bit about yourself.

Craig: Well, I’m a bioethicist at DePaul University in Chicago, and I’ve been there for 5 years. My background is in bioethics and health humanities.

Laura: How did you get into that? Very interesting!

Craig: There’s a short and a long story. I’ll give you the medium story here. So, growing up, my mom was a nurse for Planned Parenthood and ran an infertility clinic and my dad was an Estate Attorney, so he’d talk to people about their end of life wishes and planning. So, when I took a course in college, it just really spoke to me, and I realized later that it combined the two things that were dinner table conversation growing up.

Laura: Absolutely, a lot of ethical debates and things surrounding…

Craig: Yeah, so what we were talking about while we were eating our dinner, apparently people didn’t talk about over dinner. When I got to college, that was a bit of a surprise. But they did talk about it in the classroom, so I just sort of fell into this new field that was just beginning at the time, and found that it really spoke to me.

Laura: That’s amazing! You’ve written a lot about bioethics. Talk a little about that maybe.

Craig: So, bioethics is a really broad thing, which is why I’m laughing. Bioethics, depending on how you look at it, really comes in after World War II with the experiments done by the Nazis and the Japanese on prisoners. We really sort of started as how do we… we’re not treating people well. In those cases, they were torturing them. But then we looked at our own medicine and we realized that doctors didn’t necessarily talk with patients, they would talk at patients. And they would not tell them what was wrong with them, but they would say, “Hey, take two pills and call me in the morning.” That joke was because it was true. And you weren’t told what you were taking, and you weren’t part of that process of treating yourself. So, we evolved in a way along the same times as the Civil Rights movement. That’s when we really started getting programs, and we started getting centers, and media attention, which was all about “how do we deal with these new questions of molecular biology?” In 1971, in TIME Magazine, there was actually a whole issue on the ethics of this new molecular biology and how do we, as a society, deal with these issues, and how do we think about it. And so bioethics was sort of born out of the later half of the 20^th century.

Laura: Very interesting, as I don’t think a lot of people know what that term means sometimes, so that’s fascinating.

Craig: Well the term itself is interesting, because it was founded by biochemists and ecologists, and it was supposed to be about our relationship to the world (bioethics, right). And then in that same issue of TIME Magazine, where there was all this stuff about molecular biology, there was one little article about this guy at the University of Wisconsin, who had this thing called bioethics, and he was looking at the environment. And the two published in the same place, and everybody just applied bioethics to this work.

Laura: Ah, interesting. So how do you approach an ethical challenge, or how would you recommend someone approach an ethical challenge?

Craig: So they way I teach this is that first you have to identify that you have an ethical issue. So, it’s not a legal issue. It’s not a communication issue. In the hospital, 90% of what we deal with is communication issues; people just don’t know how to talk to one another. So, first, we try and identify it, and we ask questions like “How would you feel if this got out? If people heard about this?” Would that be a worry? Or, “What if this was on the front page of the New York Times?”

Laura: That’s a great way to approach it.

Craig: Yeah, and if you’re action is “ooh, that would be uncomfortable for our institution”, you might have an ethical issue. Or, is nothing happening? Are you making no decisions, because no one can figure out what to do? Or are there differences in values? One group wants to do one thing, and one group wants to do another thing? That can be a sign that there might be an ethical issue involved. So, we first do that, and then we gather our facts. We talk to everybody that’s involved. We want to make sure that.. to prepare for today, I talked to Thomas Callaghan, and then I talked to my colleagues in genetics, and went through the literature, so we want to make sure that we’re up to date with what’s going on. Then we will look at “what are the ethical issues here?” What do we identify as the moral challenges that are facing us? And then we’ll look at some ethical theories, so the philosophy class that everybody loved, I hope? At least I did.

Laura: I think everyone wanted to talk about philosophy, we just didn’t know how to turn that into a career.

Craig: And that’s it, yes. I’m happy I did, though I was actually a biology major in college, so I kind of went the other direction. So, we apply the theories, so that if we look through different lenses, what do we see here? And then often that leads us to some different recommendations. So, when I work with policy issues, ok here are some recommendations. If I work in the hospital, here are some recommendations. We never tell anybody what to do. We don’t have any authority. We’re not a priest. We’re not a lawyer. We’re not a judge. We’re not legislatures. So, we can’t tell anybody what they have to do. But we can make some recommendations over what we think are better approaches and worse approaches. We’re not really about telling people what’s right and wrong, we’re just sort of identifying what’s out there and suggesting what’s better or worse rather than “do this, and don’t do this.”

Laura: That’s probably smart, because I don’t know if that ever works.

Craig: Not in my family!

Laura: Mine either! So, tell us about the panel. So, genetic genealogy is what you’ll be talking about today in the panel. How are you going to approach it? What are your thoughts on how the technology is being used?

Craig: So, what’s interesting about this panel is it’s people from various and very strong viewpoints. So, we have people who view investigative genealogy as destruction of privacy and the end of civilization as we know it, and we have other people who are “we’re going to solve every crime on the planet.” And, in the middle is usually where bioethics end up sitting, and looks at what comes from both ways. So, I am sort of last in the rotation, and I will be listening very carefully to what everybody says. I do have some remarks that I’ve prepared, and notes that I’ve taken, but I will be changing those as I hear the arguments people are making. So, a lot of what I’m going to be doing is identifying where there are logical consistencies, logical problems, and then how does it relate to what the literature has been saying. You know, some of ethics is just your gut instinct. I’ve been doing this for 20 years, and there’s a sense that you gain an ethical voice in your head that sort of throws up little flags that says, “wait a minute, there’s something there that nobody is realizing.” So, I’m hoping to find something new that hasn’t been discussed before.  Sort of a new way of thinking about the conversation.

Laura: Well there are a myriad of issues. If you look at it from commercial databases and privacy, and how that relates to health data, to using it to solve a cold case, and who’s the custodian to what piece of information?

Craig: Right, and who owns it? I’m coming more and more to my thinking that my DNA is not really mine, it’s mine and my 300 closest relatives.

Laura: That’s a great point.

Craig: So, do I really have the right to give my DNA to a commercial database without having them all sign off on it? I have refused to do it. My spouse has, but we have no genetic relationship. And he has discovered relatives around the world that he didn’t know about, which is really interesting, and really intriguing to do, but I just feel like the loss of privacy… We haven’t dealt with the legal and the ethical issues right now, and just throwing just my personal DNA out there, I’m afraid that there aren’t enough protections in place to know how this will be used and what will be used. And we’ve seen this with the investigative genealogy. If you look at the user agreements for the commercial and the public databases, over the summer, as a result of the Golden State Killer, they’ve all been updated to say “we might give your stuff to law enforcement, and we’ll tell you if we can, but we might not be able to.” So, now there’s a sense that you’ve given a piece of yourself away, and you don’t control it. And that would be fine. If you could consent to that, you could make a choice. Not every choice is a great one, but you could make that choice. But the problem that I see is that you’re also making a choice for 300 relatives.

Laura: That’s very interesting, because of familial search and the way that things connect together, or all of the genetic genealogy success stories are part of a tree really.

Craig: And we hear about the handful of success stories, but we haven’t heard about the hundreds of thousands of people whose records were invaded. Were gone through without them knowing about it to get those successes. If you talk to the investigators, they say, “Well we clear more people with this than we catch.” So it’s a way of getting people out of the spotlight, but we do have this sense of privacy in this country. The Fourth Amendment holds on it. You can’t just look at my cell phone. The TSA can’t even just look at my cell phone, right? So, why should they be able to look at a DNA database? The other issue that I see here, which is coming about with what we call “digital medicine”, where we’re using technology that’s not controlled by the doctors and the hospitals. So, we’re used to medicine, the idea of informed consent, where you give permission to use your materials and your illnesses and your secrets to help you get better. And a lot of people, especially in these public databases are doing the same thing. They’re going to these rooms. They’re sharing this information to try and find family, but to try and find answers to these diseases and these conditions that they might have. We share that information, because we have an expectation that people will keep it confidential. That people are going to keep our secrets to help us, but now, those same secrets are being used, because these databases own them, and we have not been part of this. So, we sign this little informed consent document, but now we’re governed by the user agreement. And, I was looking at some of the user agreements for these databases, and they’re 50 pages. I mean, famously, iTunes is 56 pages. Have you ever read the whole thing?

Laura: No, certainly not. Facebook is a great example with everything that’s happened there. No, I haven’t read them.

Craig: Right!

Laura: But I did participate. And I did 23andMe and I’m rethinking it!

Craig; So, you have the right to ask them to remove your stuff from the database. However, anybody they’ve shared it with, anybody who’s shared your information, it doesn’t get removed. Which is the same thing that happens on Facebook. You can delete your account, but if anybody’s liked it or shared it, it’s there forever. So, a lot of what ethics is coming to in this space, is sort of, now that this exists and people are doing this, how do we… The barn doors are open, and the horses are out. How do we put up fences to make sure that this information is used the way we want it to, instead of this sort of Wild West now, where there are very few states that have rules about this. And, there are very few protections, if any. And a lot of this is happening: “Well, it’s not illegal, so we can do this.” But, it’s also not explicitly legal, so I think it’s better to have some system to do that. For a lot of this, we’re sort of in the new age of this. It would be better to have these conversations to prevent the problems that could become widespread when this is readily available.

Laura: Yes, let’s be proactive, not reactive.

Craig: And if you’ve ever seen the movie, Gattica, there’s this brilliant scene where  this woman goes to a kiosk, and they swab her mouth, and she says she just got a really big, wet kiss from a potential date. Can they examine his DNA? So, they take it off of her lips and then everybody is scored. They have a ranking based on how their DNA is. And, what I’m seeing, and I think what we’re seeing a little bit in this investigative genealogy is the DNA is being used kind of like a credit score, and you’re worth as a human being – your innocence or your guilt is often being determined by these techniques that we have some evidence that it works, but there’s also a lot that we don’t know. A lot we don’t know about cross-contamination and secondary… I don’t remember the other term, but when you transfer DNA from one person to another, and it can stay there for years in the same place, and the credentialing system isn’t up and running yet, and training is very inconsistent, and some labs have had a lot of problems. In my mind, if there’s one innocent person that’s locked up, then the system’s really, really broken, and we’re sort of set up as a country and a system that you’re innocent before you’re guilty, and now that we’re looking through people’s record without them knowing, there’s sort of this sense that I have that somebody’s guilty by association. It reminds me of the red scares of the 50’s. Are you now, or have you ever been a member of the communist party? And it sort of seems like because these databases are focused on people of different socio-economic levels and minority status, and geographic regions, it seems like you kind of come under greater suspicion because of who you know and where you live. And I think that’s a problem.

Laura: This is going to be a very interesting panel!

Craig: I hope so!

Laura: I think so. These are amazing points. I think a lot of people don’t really think through, naturally, there’s a lot of positive things that can come out of this, but how do we manage it?

Craig: Right, and I think that’s what it comes down to. I’m not coming here saying, “It’s immoral, we can’t ever do this. Here’s a stone from on-high that says ‘Thou shalt not’.” But, I’m also saying that we should think through this intelligently, and the technology has probably gotten ahead of our thinking. Groups like this and the organizations like this are important for having conversations like this, which is why I’m so excited to be here. That people are actually thinking about these issues. But I think it needs to go further, and we need to have state and national task forces that are kind of drawing up these rules. I know there’s a little of that going on, but it really needs to apply when we have national database and state databases, and having a consistent and coherent set of rules would really make everybody’s lives easier.

Laura: Absolutely, well we’re so happy that you’re here. Thank you.

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