How adoptees can build a ‘personal health history’ in lieu of family medical information
Heewon Lee spoke at the International Conference on Adoption Research (ICAR8) in mid-July at the University of Minnesota.
Sheila M. Eldred via Sahan Journal
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It has been nearly a month since all Minnesota-born adoptees gained access to their birth records. The Open Records Bill was a huge win for adoptees, in part because it allowed them to request medical history from their birth parents.
However, there are still many Minnesota adoptees born in a different country whose medical history remains a question mark. Heewon Lee is assistant program director of the Genetic Counseling Program at the University of Minnesota.
She joined MPR News host Cathy Wurzer to talk about a new Sahan Journal story looking at how international adoptees piece together a personal health history and what they can — and cannot —learn from genetic testing.
Use the audio player above to listen to the full conversation.
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Audio transcript
CATHY WURZER: Coming up here, we're going to be talking about a month-- it's been nearly a month since all Minnesota-born adoptees gained access to their birth records. The Open Records Bill was a huge win for adoptees, in part because it allowed them to request medical history from their birth parents. However, there are still many Minnesota adoptees born in a different country whose medical history remains a question mark.
Heewon Lee is Assistant Program Director of the Genetic Counseling Program at the University of Minnesota. She's part of a new Sahan Journal story that looks at how international adoptees pieced together a personal health history and what they can and cannot learn from genetic testing. Heewon Lee, thank you for joining us.
HEEWON LEE: Oh, thank you so much for having me, Cathy.
CATHY WURZER: I'm curious, how many international adoptees live in Minnesota? Do we have numbers?
HEEWON LEE: Well, I don't have all international adoptees, but we are a very unique state in that there's over about 15,000 Korean adoptees. And sometimes I joke around that there's more of us than lakes here. And we really have a special place in Minnesota history with immigration.
CATHY WURZER: I understand you were adopted from Korea. And I'm wondering what your experience has been like getting information about your health history without really knowing who your birth family was.
HEEWON LEE: Right. I think for, just like many of us who are from intercountry adoptions or international adoptions, they often have very few medical records and a lot of barriers to information. We often have missing records. There's language and cultural barriers. And there's a lot of secrecy in how records are kept in other countries.
So I've definitely tried. I tried my agency and also did some direct-to-consumer testing, visited my agency, and just very, very little information that I was able to find, which is pretty common.
CATHY WURZER: And how does it affect you as you try to figure out your health history?
HEEWON LEE: Right. Well, I think in the beginning, it was just very frustrating because of the barriers. When I called my agency back in 2000, they said, well, it would be $500. And back, then I didn't have $500. So it was a real financial barrier.
And then when I went to Korea, I asked for the records, and they said, I'm sorry, we can't give you a copy, because we think it would be upsetting, which was also really frustrating and very paternalistic. And then when I went back with my now spouse, but then partner, who's male, they said, oh, of course, you can have a copy. Here you go. So I think it's been an up and down roller-coaster, just like many adoptees trying to locate their information and find out any kind of piece for family health history.
CATHY WURZER: Because I'm wondering if you've had any health issues that you've had questions about, is that what got you to really start on this path?
HEEWON LEE: Well, actually, funny enough, I had seen an article in the New York Times about a researcher who was finding missing children in South America. And I was really inspired by that work and actually tried to start a nonprofit, realized I didn't have enough information, and I went back to school to be a genetic counselor, actually, here at the University of Minnesota.
And so I was really inspired by that initial way of bypassing agencies and other barriers to look for genetic relatives through DNA testing. And so for me, also having biological children, it made me realize, I really, like many adoptees, we really pass down an absence of information. There's a lot of blank forms. There's no multigenerational mirrors to look to.
So we don't really know our risks. And that was definitely part of my motivation to go back and be a genetic counselor and help others access their information.
CATHY WURZER: The genome, of course, is fascinating. How much, though, can you learn from genetic counseling? There are some limitations.
HEEWON LEE: Definitely. I would say there's two different types of testing that I usually talk about. And one is the direct-to-consumer where you can just get it at your drugstore. The other is seeing a genetics professional, like a genetic counselor.
Both have benefits and limitations. But we can find out some cancer risks. Sometimes, there's risk for cardiology conditions, neurology. One of the benefits for if a person wants to be pregnant or is currently pregnant, they can find out if they're a carrier for certain recessive conditions like sickle cell anemia or cystic fibrosis. So there's a lot of utility to it, but it can't answer everything, unfortunately.
CATHY WURZER: Because, of course, again, getting back to the situation at hand, family health history is, when you're at a doctor's office, usually, that's the first thing they ask you, right? So you need to piece this together. And that's where, as you say, some genetic information can be helpful. I'm wondering about the first steps that adoptees should take to start building some kind of a personal medical history.
HEEWON LEE: Yeah. That's such a great question. I usually really encourage people, especially adoptees or people without family health histories, to really build their own personal health. So that means going to all of your routine screenings, your mammogram, your prostate screening, your colonoscopy, your cholesterol, and really keeping upping that and building that for yourself and any other biological relatives you might have, like children, to pass that information down.
I also really recommend considering seeing a genetic counselor to discuss risk for cancer. And cardiology, again, cannot tell us everything. And it's hard without that family history to make sense of some of those results. But it's definitely one path.
And then for those who want to use direct-to-consumer testing, it's definitely a conversation starter. Again, very limited, not as comprehensive as clinical testing, but it at least can get through the door, start a conversation, and really become motivated and share those goals with health care providers.
CATHY WURZER: Do you run into a number of adoptees who come to you asking for help?
HEEWON LEE: Sometimes. I think there have definitely been a huge push in the international community, adoptee community at conferences and their social media groups-- people are taking these direct-to-consumer testing. They're trying to seek out family relatives.
And now, as we're aging, we're definitely more aware of our health and some of the health conditions. So we are talking about risk for breast cancer at a younger age than European population, things that are really important that are not out there. So, yes, we're definitely talking about it.
CATHY WURZER: All right. Heewon Lee, thank you for your time. We appreciate it.
HEEWON LEE: Oh, thank you so much for having me, Cathy.
CATHY WURZER: Heewon Lee is the Assistant Program Director of the Genetic Counseling Program at the University of Minnesota. By the way, you can read the full story by the Sahan Journal at mprnews.org.
Heewon Lee is Assistant Program Director of the Genetic Counseling Program at the University of Minnesota. She's part of a new Sahan Journal story that looks at how international adoptees pieced together a personal health history and what they can and cannot learn from genetic testing. Heewon Lee, thank you for joining us.
HEEWON LEE: Oh, thank you so much for having me, Cathy.
CATHY WURZER: I'm curious, how many international adoptees live in Minnesota? Do we have numbers?
HEEWON LEE: Well, I don't have all international adoptees, but we are a very unique state in that there's over about 15,000 Korean adoptees. And sometimes I joke around that there's more of us than lakes here. And we really have a special place in Minnesota history with immigration.
CATHY WURZER: I understand you were adopted from Korea. And I'm wondering what your experience has been like getting information about your health history without really knowing who your birth family was.
HEEWON LEE: Right. I think for, just like many of us who are from intercountry adoptions or international adoptions, they often have very few medical records and a lot of barriers to information. We often have missing records. There's language and cultural barriers. And there's a lot of secrecy in how records are kept in other countries.
So I've definitely tried. I tried my agency and also did some direct-to-consumer testing, visited my agency, and just very, very little information that I was able to find, which is pretty common.
CATHY WURZER: And how does it affect you as you try to figure out your health history?
HEEWON LEE: Right. Well, I think in the beginning, it was just very frustrating because of the barriers. When I called my agency back in 2000, they said, well, it would be $500. And back, then I didn't have $500. So it was a real financial barrier.
And then when I went to Korea, I asked for the records, and they said, I'm sorry, we can't give you a copy, because we think it would be upsetting, which was also really frustrating and very paternalistic. And then when I went back with my now spouse, but then partner, who's male, they said, oh, of course, you can have a copy. Here you go. So I think it's been an up and down roller-coaster, just like many adoptees trying to locate their information and find out any kind of piece for family health history.
CATHY WURZER: Because I'm wondering if you've had any health issues that you've had questions about, is that what got you to really start on this path?
HEEWON LEE: Well, actually, funny enough, I had seen an article in the New York Times about a researcher who was finding missing children in South America. And I was really inspired by that work and actually tried to start a nonprofit, realized I didn't have enough information, and I went back to school to be a genetic counselor, actually, here at the University of Minnesota.
And so I was really inspired by that initial way of bypassing agencies and other barriers to look for genetic relatives through DNA testing. And so for me, also having biological children, it made me realize, I really, like many adoptees, we really pass down an absence of information. There's a lot of blank forms. There's no multigenerational mirrors to look to.
So we don't really know our risks. And that was definitely part of my motivation to go back and be a genetic counselor and help others access their information.
CATHY WURZER: The genome, of course, is fascinating. How much, though, can you learn from genetic counseling? There are some limitations.
HEEWON LEE: Definitely. I would say there's two different types of testing that I usually talk about. And one is the direct-to-consumer where you can just get it at your drugstore. The other is seeing a genetics professional, like a genetic counselor.
Both have benefits and limitations. But we can find out some cancer risks. Sometimes, there's risk for cardiology conditions, neurology. One of the benefits for if a person wants to be pregnant or is currently pregnant, they can find out if they're a carrier for certain recessive conditions like sickle cell anemia or cystic fibrosis. So there's a lot of utility to it, but it can't answer everything, unfortunately.
CATHY WURZER: Because, of course, again, getting back to the situation at hand, family health history is, when you're at a doctor's office, usually, that's the first thing they ask you, right? So you need to piece this together. And that's where, as you say, some genetic information can be helpful. I'm wondering about the first steps that adoptees should take to start building some kind of a personal medical history.
HEEWON LEE: Yeah. That's such a great question. I usually really encourage people, especially adoptees or people without family health histories, to really build their own personal health. So that means going to all of your routine screenings, your mammogram, your prostate screening, your colonoscopy, your cholesterol, and really keeping upping that and building that for yourself and any other biological relatives you might have, like children, to pass that information down.
I also really recommend considering seeing a genetic counselor to discuss risk for cancer. And cardiology, again, cannot tell us everything. And it's hard without that family history to make sense of some of those results. But it's definitely one path.
And then for those who want to use direct-to-consumer testing, it's definitely a conversation starter. Again, very limited, not as comprehensive as clinical testing, but it at least can get through the door, start a conversation, and really become motivated and share those goals with health care providers.
CATHY WURZER: Do you run into a number of adoptees who come to you asking for help?
HEEWON LEE: Sometimes. I think there have definitely been a huge push in the international community, adoptee community at conferences and their social media groups-- people are taking these direct-to-consumer testing. They're trying to seek out family relatives.
And now, as we're aging, we're definitely more aware of our health and some of the health conditions. So we are talking about risk for breast cancer at a younger age than European population, things that are really important that are not out there. So, yes, we're definitely talking about it.
CATHY WURZER: All right. Heewon Lee, thank you for your time. We appreciate it.
HEEWON LEE: Oh, thank you so much for having me, Cathy.
CATHY WURZER: Heewon Lee is the Assistant Program Director of the Genetic Counseling Program at the University of Minnesota. By the way, you can read the full story by the Sahan Journal at mprnews.org.
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