The Incidental Findings, Unwanted Information, and the “Safety” of Genomic Testing Podcast Transcript

Samantha Lewis:
Hello, and welcome to a CHI Podcast for the upcoming Inherited Disease Diagnostics Conference being held this August 19th and 20th in Washington, DC. My name is Samantha Lewis. I'm the conference producer working on the meeting. Today I'm speaking with Dr. Kimberly Strong who is the primary faculty of the Program in Genomics and Ethics at the Medical College of Wisconsin. She also holds a secondary appointment with the Medical College of Wisconsin Human and Molecular Genetics Center. Dr. Strong's primary academic area of expertise is in the application and limitations of empirical bioethics, particularly in its value in informing the discourses surrounding contentious and emerging technologies. My first question for you is, can you give us a bit of background about your work at MCW?

Kimberly Strong:
Sure. I'm the primary faculty for the Program in Genomics and Ethics at the Center for Bioethics and Medical Humanities. I have a secondary appointment with our Human and Molecular Genetics Center. The program that I'm involved with was originally funded by the Advancing a Healthier Wisconsin Education and Research Fund really to help bridge the gap between the advancing capabilities of sequencing technologies and some of the ethical, legal, and social implications of those technologies. Bringing my background, which is training in laboratory genetics and then I trained in genetic counseling quite a bit later and then most recently in bioethics, I tend to conduct empirical studies to really look at the ways that some of those ethical, legal, and social implications are playing out. That data in particular is utilized then to try and inform ethical debate, clinical practice, and ultimately policy development.

Samantha Lewis:
In your work, in your research, what have you found affects the attitudes of patients receiving genetic information?

Kimberly Strong:
I think that's a really interesting question. Some of the things that I've found seem to be quite powerful in determining whether or not someone wants to receive some of the genetic information that's available to, say genome technologies, or even any genetic testing. It tends to be around personal or family experience with illness. It's something that I tend to call, "What's on your radar," when I give talks. If you happen to come from a family that's had experience with lots of chronic conditions, either in yourself or within your family, or life threatening conditions, the promise of finding out more information that could be useful to yourself or family members seems to be more appealing. People tend to talk about stories and ways that their family has been affected or utilize the technologies when they talk about this. Other things around personal conviction or spiritual beliefs might be guiding whether or not someone has a positive or a less favorable opinion about receiving genetic information. I've written previously about the powerful emotions that are driven when a child's life or health is at stake, and how that might influence the ways that their parents would consider technologies or receiving information that they themselves might not have pursued otherwise. Lastly, I think, although equally important are some personality types. We know that some people really want or desire for all information available. They'll go online. They'll do all sorts of things to gather as much information as possible. I would see that this is likely another area where there are going to be people who want to know all the genetic information they can about themselves. Then there's other people that finding out lots of information, particularly information that might not have everything known about it and there might be some uncertainty about it, that can cause increasing stress for them. I think, importantly, there are just going to be different perspectives and different personalities. Some of that will drive one's desire for genetic information.

Samantha Lewis:
Patient perspectives and opinions aside, in your opinion, what types of genomic information should patient's have access to? Is there anything that's currently perceived as harmful for them to have by physicians or genetic counselors?

Kimberly Strong:
No. I think when it comes to thinking about the sorts of information that patient's should have access to, I think it's something that really should be negotiated or discussed with the patients themselves, between the clinician and patient. Part of that, we know that there have been attempts made at professional recommendations, professional society recommendations, around what information should or shouldn't be provided or available for people to have access to. These have been met with widespread discussion, and in some cases has been quite controversial. Our group here has published on this area as well. What we've suggested is that in the absence, particularly in the arena of children, the absence of evidentiary harm, in the absence of noticeable harm or recorded harm, that perhaps we should stick with the current societal norms which state that the parents decide. We would suggest the same goes for someone who's having sequencing done themselves. I know that I'm kind of dodging the question a bit, but I think that gives a good understanding of where I stand on that. I think that it's going to be a personal decision for the most part. When it comes to the discussion about what might be perceived as harmful, I think that depends on how someone defines harm. We can think about harm in ways that insurability might be affected by a particular genetic predisposition results. We know that the Genetic Information on Discrimination Act has limitations. That could be certainly seen as a harm if someone had some sort of limited access to insurance based on the fact that they have some genetic information now known. Other areas of harm that gets talked about, of course, are the potential for psychosocial harms or changes to one's life that he or she perceives as a negative impact or limitation to an open future based on knowledge about predispositional things for instance. As well, when we think about genetic information, it's not just about the individual. It's also about others that are genetically related to that individual perhaps. There's the potential for harm in that kind of situation as well where you might have one family member who wants to know about particular genetic status for various conditions and another family member who doesn't. By the nature of one person finding that out it has the potential to say something about the other family member. All of this, I think, hangs on, as well, the perspectives of people and how definitive they interpret genetics as being ... Some people see it as a multi-factorial situation, and some see genetic results as quite definitive. If you have this gene then you will get this condition. That may be for some regardless of the facts as to whether or not that is truly the case.

Samantha Lewis:
Obviously one of the biggest topics, I guess, in genomic testing right now is getting physicians on board. What do you think is the best way to digest genomic information for physicians, and how do you determine what information should be passed along?

Kimberly Strong:
I think there's a significant learning curve for everyone in that regard, in particular physicians that already have a significant learning curve. When they're going through training they're already learning about lots of things, and genomics and genetics in general is quite specific. I think that educational opportunities are going to be needed. Traditionally, given my background and training in genetic counseling, I would have previously really argued that return of genetic results, for instance, should be done by those or with those that have specialist training like geneticists and genetic counselors. With the technology on the rise and the likelihood of there being more people potentially interacting or taking up genome sequencing or exome sequencing, any of the genetic technologies, I think that it's increasingly unrealistic to think that the work force is going to be able to sustain meeting with all those people. I do think it's important for physicians that are not specialists in genetics to be able to talk about some of these things with their patients. My area is around the ethical, legal, and social implications. Of course, you don't need to be an expert in the science of genomics in order to have those conversations. I think what you are asking about really does involve some of the science. I think when it comes to those specifics I'm going to leave that to the experts in the science to say how, in fact, they think what level of information and how best to train the physicians in that. When it comes to what information should be passed along, or how I determine information being passed along, from that perspective I'm not a practicing genetic counselor. I don't personally determine what information is being passed along. Going back to what I was saying previously, I think that it's really important for that discussion between the people who are going to be potentially receiving results to be a part of the conversation and deciding what information should be returned. I would go on record saying that I don't think there are necessarily things that are completely off limits. I think that there are ways to manage that information in ethical and clinically responsible ways. Having said that, I think it's also important to think about the fact that for different people there are going to be different perspectives and different reasons for why they're taking up the technology, particularly whether they see themselves as healthy, so they're looking at genome sequencing for the purpose of wellness planning or a healthier lifestyle, that sort of thing. Or if they have some sort of illness or indication for why they're pursuing the technology. I think the stakes are really different.

Samantha Lewis:
My final question for you. I'm going to ask you to look into your crystal ball a little bit. How do you see genomic information being used in the next five years by doctors and patients?

Kimberly Strong:
That's really the million dollar question, isn't it? I think for some the value of the genomic information is already here. For instance, cancer genomics, Mendelian genetics, Mendelian diseases in particular, and pharmacogenomics, some of that promise is already here. If we're talking about widespread public health genomics and initiatives, then I think there's a lot more uncertainty or disagreement as to when that promise might be seen. Whether five years is enough time, I'm not sure. I think that it depends on who you're speaking to as to how optimistic people are about the promise down the track. I think overall the perceived value that people have around the technology and its associated risks are going to be different for different people. So that's kind of my constant running tag, or my area of interest in particular. We know that some people are going to be early uptakers and find value in the information that's provided. Others are not going to want anything to do with the technology regardless of how the science progresses and whether or not there's clear indicators of how it could be useful for reasons that I mentioned previously. I'm particularly interested in doing the type of work that's really going to help researchers, clinicians, and policy-makers better understand the various viewpoints that are driving the spectrum of people that are making decisions around this in order to foster practices and policies, etcetera, that will protect those different positions. I think that's, for me, one of the driving factors in the research that I do.

Samantha Lewis:
Excellent. That is all we have for you today. Kim, thank you so much for taking the time. This has been a CHI Podcast with Dr. Kimberly Strong of the Medical College of Wisconsin. You can hear more from Dr. Strong, as well as other leading genomics researchers this August 19th through 20th in Washington, DC.

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