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Kids, Genetics, and Privacy: The Future of Medicine
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Sanford Health

We're talking about personal genetics. Specifically, how the rapidly evolving field of personal genetics impacts children.My guest here are Liz McMillan, the Sanford Promise Program Director and Lynsey Kortan, physical science teacher at Yankton High School.

Listen to the full conversation here.

Tell me, Liz, what the Sanford Promise Program is to begin with, so we're all on the same page.

[Liz McMillan] We are a part of the Sanford Health Network. Sanford Health has Sanford Research, which is a biomedical research facility here in Sioux Falls. A couple of our scientists and the current executive vice president, Dave Pierce, put together an education outreach program. We work with K-12 students and teachers to really share a passion for STEM and for science and to allow the community to understand science and be scientifically literate.

You've been working with the Harvard Medical School,  the Personal Genetics Education Project. What has that partnership been like?

[McMillan] I'm at the P.G. Ed team actually. At a workshop that they provided about ethics and social justice associated with personal genetics as a research institute and part of Sanford Health, we are interested in genetics and healthcare—how it's related to understanding rare diseases, and understanding how we function. This was the first time that I, even as a former science educator, really started thinking about the ethics and the social context of genetics and the things that we have to think about when it comes down to genetics.

P.G. Ed and their team out of the Harvard Medical Center has actually really started to think about a lot of those questions far in advance of us really thinking about them. They had the foresight to put some of these questions out there and to get communities having conversations. We thought it was important to bring those conversations here, to South Dakota. This project is bringing their conversation from Massachusetts all the way out to rural South Dakota.

Genetics and Social Justice Conference. That sounds like a pretty heady experience. Tell me some of the key elements of how to consider social justice in the field of genetics.

[McMillan] When we think about genetics, each of us has our own unique set of D.N.A. I've always celebrated how that means that I might have a slight change that makes me different from everyone and that's what makes me special. That's why my eye color, hair color, or more importantly, even, the function of my body and the things that I can do and am capable of [are different from yours]. How that might be connected to genetics, and what is connected to genetics? When we really start to think about that, and we think about identity and who we are and the cultures that we are a part of, what is encoded in our cells? What of that is part of our environment and part of the things that we believe to be our own identity? Is it about that code? That blueprint that builds you? Or, is it about all the other things that have an influence on who are?

Is it mostly a conversation about identity and understanding who we are? Or does it turn into—when you say social justice—policy issues?

[McMillan] There's a lot of legal implications of genetics. Whether you talk about the Genetic Information Nondiscrimination Act or G.I.N.A. that a lot of our businesses and organizations currently have to, it protects us from a lot of the things that go on with genetics and discrimination potential. Also, when we think about things like the healthcare conversation we've been having for the last hour, how do our genetics relate to that? And coverage? Then when we think about even things like the Olympics—if everybody remembers from last summer, when we think about athletes. Defining what an athlete is and what gives them advantages potentially to being better. Is that genetics? Is that training? What is it there? What's fair? We like to ask a lot of those questions and get young people, in particular with this project, starting to think about the questions and starting to think about how their opinions might weigh into some of those policy decisions down the road.

Let's talk about those young people. Lynsey, you're a high school teacher. What sort of things are on kid's minds today? Is this something that they're bringing up to you? Or, is this something that you start teaching in science and then the door opens and everything sort of spills forward?

[Kortan] I've taught the last five years in a smaller school district, where I taught a wide range of subjects, including biology and genetics. I've taught genetics. Part of that genetics content that we went over then led us into conversations about personal genetics and how it affects them individually. We had conversations about simple things like cleft chin and "What if you have the breast cancer gene? Would you want to know? What would you want to know? What diseases would you want to know?" Just like in adults, their answers vary widely. Even when you ask them, then, what should we do with that information? Those responses are very wide ranging as well. We then start talking about, how should we use this information? We get into that conversation. I show a tid bit of the movie "Gattaca" and we talk about designer babies and all those kinds of things. The topic kind of morphs into a pretty wide range of genetics—conversation, decisions and even the legalities and the ethics of it.

Do students tend to be scared or freaked out or intimidated by the conversation? Or, do they just sort of jump in and say, "This is our generation. This is what we're dealing with, and we're not phased?" Versus maybe their parents who came in and were a little more surprised by how much the conversation has changed in the past 10 years, for example.

[Kortan] I think mostly they're intrigued. Any time you can tie what is going on in the classroom to them personally, it really ignites their interest in the topic and the subject matter. A lot of the times I get questions about, "Well, does that mean this? Or what if?" Then they bring up issues with their family—maybe diseases that run in their family. "Does that mean that I could find out if I'm going to get this certain disease?" Or, "My uncle died from this cancer." I think it's mostly interest that comes up. Then we start talking more about the ethical things and the designs that have to be made, and policy, and what they think. Who should be making those decisions, and what kind of decisions should be made? Then they get a little bit more frustrated, because making those hard decisions is really difficult. Even as an adult. They're looking for that one right answer that sometimes they get used to having in school and in a science classroom. That's one of the other things that's really nice about this curriculum, is that it leads them in the direction that science education is moving in. That it's more about critical thinking and doing that problem solving, than “here's the definition, here's the quote unquote, answer”.

Let's talk about privacy. When we talk about kids, they're living so much of their lives more in public. All of us are. In the last 10 years, 16 years or so. Their childhoods are online as well. Do you see a sense of what those privacy conversations have to be with them? Do you see that they are maybe more open about what they're willing to share than say you would be or their parents would be, for example?

[Kortan] I can't say specifically that I've talked to the students about sharing their genetic information on social media. Actually, I hadn't really even thought about that aspect of it until attending the P.G. Ed. conference that I attended in Boston a few weeks ago. That idea of knowing that information not only affects you, but if you share it out you're also sharing out the genetic information not only of you but your parents, your siblings and things like that. How far reaching does that sharing go? Who should have a say in whether you share your genetic information or not?

Give me an example of something that you would share that would then indicate that your parents, would tell part of their genetic story as well, or part of your brother's or sister's genetic story?

[Kortan] It could be any number of diseases. I feel like the breast cancer gene is probably one that's more familiar. The B.R.C.A. genes. If you share that, that also then gives an indication that your sister probably also has a very good chance of having that gene, if you have it. Or, just any number of diseases, [and even] things like we were talking about, athletic abilities. Having the fast twitch muscle fibers and those kinds of things.

I do not have these. Then I have an excuse right?

[McMillan] We had an identical twin at our last shop who presented about even knowing whether theirs privacy associated with finding out that information and whether or not you have the right to tell someone else. Or, if you have an expectation that you should tell someone else. That same question goes with our physicians. If they find something through a test that they weren't expecting to find out. What is it that we can do? Do they have to tell you about it? Should they only tell you if there's something actionable that you can do with that information? There's a lot of questions out there that are still questions that don't have policy attached to them, yet. It's really important to start having those conversations and provide equity for people so that we all know we are all on the same basis of knowledge—that we have the information that we need to make the intelligent decisions and to make decisions that affect not only us personally, but potentially our family.

Liz, let's talk about parents a little bit. Parents and grandparents—mostly parents, but some grandparents who are guardians and are going to be much older than the kids in question, have never had to face this before in their own life, [and] it's all kind of a mystery. It's changing fast. What conversations do parents need to have with each other? With their kids? About who has control over what's discovered and what to do with it next? What if those kids grow up and it [information] passes to them, so start there on that topic. Where do you want to begin?

[McMillan] Yeah. Even the information passes to them. Recently one of the programs that exists within research is that you can donate your D.N.A. and then you can actually have that sequenced and they can provide information publicly so that we can learn more and know more about what our D.N.A. is, and what the code information is. Your D.N.A. would be public. It would not be connected to your name, but that genetic code potentially would be out there and whether or not that has implications for my children who have half of my D.N.A. down the road, there might be an opportunity for someone to get that information back from them. Also, if I found out that I had some sort of disease, is it fair for me to tell my kids about that when they're very young, or when they're older? Or would it be fair for them to find out the information? Hemochromatosis is a gene that runs in my family. It's a disease that my great grandfather died from. It's important for us to know if you have it, because it's easily treatable. You give blood and you get to reduce the iron in your blood and so it's something that we can do and treat. Is it important for us to find out genetically if we have that condition or not? My grandmother actually had a test, over 20 years ago, to find out if she was a carrier for the disease early on in opportunities to figure out if she actually had it. They knew she didn't, but it's been this ongoing conversation in my family. Should my dad find out if he has it, then that would let us know if we have to worry or not. It's just information that you can provide. In this case, again it's not something that has a lot of implication, but imagine a disease like Huntington's that might really be a larger conversation to have with your family.

My mind goes to addiction, as well. Are those conversations a little more complex and are some of the things are mental health issues? Some of the things that are attached with more of a stigma then say, breast cancer is, how does that impact the conversation, Liz?

[McMillan] Or even the gene that maybe makes you more likely to commit crime. We do P.G. Ed. Offers a whole lesson set on the American Eugenix Movement. This was brand new information to me. I taught science, but I went through school and did social studies and history classes. A lot of the conversations that we think about around the world wars and around Eugenix are, "Oh it's Germany. It's something that happened elsewhere. It's something that happened in a different location. That's not us. But a lot of that has happened here in the U.S., so making sure that we're aware of what our own history is and how that's related to it. Some of those conversations had to do with things, like “can your genes tell us information about some of your psychological traits?” There are some great videos that P.G. Ed. puts out that you can watch about people who learn about depression and the relationship there, but whether a gene makes your more aggressive or not, does that mean that we should keep an eye on you minority report style? You're going to commit a crime! Is that something that we should be aware of, or does it actually have that much relevance over whether or not you're going to use that aggressive instinct to actually be a criminal. What are those relationships?

Are there things that people can do now to sort of pre-preemptively protect their genetic information? Are there places that, because we're still in that wild west phase of this, are there things that are being done that people aren't aware of? Do you need to raise awareness with kids to say, I'm thinking about genetic swabs to send off to some internet company to tell you your heritage? Do you know that that's safe? Do you know that those things are private once you voluntarily give that to someone for a specific purpose? Are we protected in that way?

[McMillan] At this point, that's the questions we want people asking. Making sure before you send your sample away to get a genetic test, even if it's something that's fun and anecdotal, asking, “what are you doing with my D.N.A.?” What's your disposal plan? What is your privacy plan? The same way you might, it's maybe a really inappropriate connection, but on a website, that you look for a trusted website that's got the backup and got all of the privacy going on with it. There are organizations who do that direct to a consumer. A lot of our healthcare locations will be able to do a genetic test and run that through your medical records, and those are just as safe and private as any other test that you get through your medical records.

Lynsey, what interests you about this so much that you're continuing the work through P.G. Ed., and that you're continuing to go to conferences? What keeps you coming back and saying, “oh I can't turn away from this it's so compelling”?

[Kortan] So I have actually always had an interest in genetics and teaching genetics, but then more recently, I’ve gotten pregnant after several years of infertility treatments, including I.V.F.

When you go to these doctor appointments, one of the things that they do at the very first appointment is they bring in a genetic councilor to talk to me and my husband about whether we would like to be tested for any number of diseases that we might be carriers for, and that we could potentially pass down to our children. Right away from day one we had to start having those genetic conversations about, “do we want to know? Then what do we do with that information once we know it?” Because you can't unknow it. And, how far does that information go, especially when you get into the conversation about I.V.F. and the possibility of doing pre implantation genetic diagnosis of the embryos that you're using. What are the ethical implications there? That's really kind of reignited my interest in genetics, and kept me interested in the idea of specifically personal genetics and how it impacts us, and what we're doing with that information.

Isn't your mind just kind of blown a little bit with the increased responsibility of that?

[Kortan] Yes. It's huge. I mean because you have, Liz and I have had conversations about this, whether you should know that you have these diseases so that you can [treat them], and if you do know that you have them, do you have a responsibility not to have children? Do you have a responsibility to choose then, embryos that don't have that condition? Are you being irresponsible by not checking all your embryos? But then there's that question of “well how do I feel about hand picking embryos?”

Then you're being God.

[Kortan] Yeah. Exactly.

Or at least that's part of the conversation. You're being something that maybe you weren't intended.

[Kortan] When you talk from person to person, everybody is going to have varying degrees of opinions on those topics, from strongly disagreeing, to strongly agreeing, even on one specific question. That's a really difficult thing, and you have to make those personal decisions.

Are these conversations you had before you got pregnant? Because now you're bringing it back to dating and back to the high school students. Because now you're looking for a partner who wants to have kids who has a similar opinion to you about some of those monumental decisions. You could start fighting on this before you get very far.

[Kortan] I'm always shocked at how many kids go to the "Yeah, I'd want to know all that information. Yeah of course I'd ask my spouse and yeah we'd do these kind of things." And then I think about my own progression and my experiences through this that I was pretty open and interested in genetics since high school, and so I probably would have been that kid that stood in the strongly agree, we should know all the information about ourselves and our kids, and I would want to know all of my information, and legally I should be able to. Then I got to the point where I did this, and I got offered the screening when I was pregnant and was 11 weeks along. You can screen, not genetically yet, but at that point it was just looking at some potential characteristics that would lead to an increased likelihood of developing or having a child with a condition. I really started to then question all of those previous [ideals], like "Yeah, jump right in." I've had friends who have had children with rare diseases, and whether they would choose not to have that child like some of those things that just come into question about our population, and society, and the choices that we make, and I can't imagine having to be a lawmaker and having to combine all of those pieces of information from everyone and trying to put that together.

And then as you talked about athletics—so you might have a genetic indication of a certain disease, even going back to breast cancer, but there's certainly behaviors and environments that can impact some of these things too. Maybe not all of them, but some of them.

[Kortan] Yeah. I think that's something that gets brought up in my classroom is then we start talking about, [for example, if] you're talking about, if as a kid I would have wanted to know this, and if I asked my students if you could pick the traits that your child would have, would you? And what traits would you pick? And inevitably they all start out, yep, I'd pick this and I'd want them to be tall, to be a basketball player. I want them to because they want the traits that they wanted that they didn't get, and then when you start talking about, well, how would you have felt if your parents had made you tall to be a basketball player and you hated basketball? And they'd spent money, too.

Right. The story changes.