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Communicating Breast Cancer Genetic Testing Results to Patients

Insights From:Adam M. Brufsky, MD, University of Pittsburgh Cancer Institute; Claudine J. Isaacs, MD, Lombardi Comprehensive Cancer Center; Harold J. Burstein, MD, PhD, Harvard Medical School
Published: Monday, Jul 25, 2016


Transcript:

Harold J. Burstein, MD, PhD:
Because the information is genetic information, and has the possibility of identifying women who are at risk for developing cancers in the years ahead, and has implications for the genetic risk of developing cancers in family members, there’s been a lot of medical–legal concern about genetic testing—which has led to appropriate caution in terms of who gets testing and what kind of documentation is done. The good news is that recent legislation has meant that it’s harder to discriminate against people who have genetic predispositions to cancer. In fact, it’s against the law, and for the most part, that’s been honored. People still worry a little bit about what could happen in the future should those laws change or should other genetic information become available.

But, for the most part, the key is that you want to talk to patients about genetic testing and make sure that they’ve given their informed consent to this because it will generate information which can track both them and their family members, over long periods of time, as being at risk for developing an illness. Again, this is not unique. I think people imagine too much that genetic testing is different from other kinds of testing. If you get tested and have a very high cholesterol level, you are at greater lifetime risk of having a heart attack, and that is going to affect your insurability, we know that. Fortunately, genetic information so far doesn’t. But, again, it’s not something that’s so unusual for patients, or family members, or clinical teams to think about. So, we try and meet with patients. We try and talk to them very candidly about what’s known about the legal implications and the insurance implications of this testing, and we make sure that we have their permission before doing the testing.

Adam M. Brufsky, MD, PhD: Sometimes when we do somatic gene sequencing, say to look for a new therapy and someone comes in with metastatic disease…I’ll give you an example. If someone has metastatic lobular breast cancer—and has progressed through multiple therapies—some of us will do next-generation sequencing of the tumor. And sometimes we’ll find a gene called CDH1, which is a gene that actually is a gene for e-cadherin—which has been associated with diffuse gastric cancer. It’s a risk of gastric cancer, and so these are the sort of things—these incidental findings—that may come out.

There’s a huge debate right now about whether to inform families of these mutations. And I think that where the debate seems to be going is in the interest of full disclosure. To let people know, if they’re going to have a next-generation sequencing done on their tumor, we may find germline mutations that may have significance for them and their family. I think that we’re moving toward giving people that information. By moving toward, I mean there’s going to be agreement, I think, with most of the major societies to allow that data to be disclosed. I think that, personally, I would disclose that data. I let people know up front that we may find those sort of incidental findings, and I ask them if they want to know. To me, that’s the way to do it, to let people know up front that they may have things that may be inherited in their germline. But, again, I think that we’re slowly coming toward agreement, as a medical society of oncologists and geneticists, toward how to handle this.

Generally, the way I do my communication is through my y genetics group. They have a lot of experience. We tend to try to have a genetics group involved. In other words, it really is going to depend on what the mutation is, and what the gene is, and what their risk is. For BRCA1 or BRCA2, for a family member at risk, and they’re young and they chose not to have a bilateral mastectomy, for example, we potentially do MRI screening. I think for someone at risk for other mutations, there may be another set of screenings, maybe frequent colonoscopy, maybe CT. There’s a lot of various ways that we do screening, and it really is gene-dependent. But, generally, I try to get my genetics experts involved early on in the process.

Transcript Edited for Clarity
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Transcript:

Harold J. Burstein, MD, PhD:
Because the information is genetic information, and has the possibility of identifying women who are at risk for developing cancers in the years ahead, and has implications for the genetic risk of developing cancers in family members, there’s been a lot of medical–legal concern about genetic testing—which has led to appropriate caution in terms of who gets testing and what kind of documentation is done. The good news is that recent legislation has meant that it’s harder to discriminate against people who have genetic predispositions to cancer. In fact, it’s against the law, and for the most part, that’s been honored. People still worry a little bit about what could happen in the future should those laws change or should other genetic information become available.

But, for the most part, the key is that you want to talk to patients about genetic testing and make sure that they’ve given their informed consent to this because it will generate information which can track both them and their family members, over long periods of time, as being at risk for developing an illness. Again, this is not unique. I think people imagine too much that genetic testing is different from other kinds of testing. If you get tested and have a very high cholesterol level, you are at greater lifetime risk of having a heart attack, and that is going to affect your insurability, we know that. Fortunately, genetic information so far doesn’t. But, again, it’s not something that’s so unusual for patients, or family members, or clinical teams to think about. So, we try and meet with patients. We try and talk to them very candidly about what’s known about the legal implications and the insurance implications of this testing, and we make sure that we have their permission before doing the testing.

Adam M. Brufsky, MD, PhD: Sometimes when we do somatic gene sequencing, say to look for a new therapy and someone comes in with metastatic disease…I’ll give you an example. If someone has metastatic lobular breast cancer—and has progressed through multiple therapies—some of us will do next-generation sequencing of the tumor. And sometimes we’ll find a gene called CDH1, which is a gene that actually is a gene for e-cadherin—which has been associated with diffuse gastric cancer. It’s a risk of gastric cancer, and so these are the sort of things—these incidental findings—that may come out.

There’s a huge debate right now about whether to inform families of these mutations. And I think that where the debate seems to be going is in the interest of full disclosure. To let people know, if they’re going to have a next-generation sequencing done on their tumor, we may find germline mutations that may have significance for them and their family. I think that we’re moving toward giving people that information. By moving toward, I mean there’s going to be agreement, I think, with most of the major societies to allow that data to be disclosed. I think that, personally, I would disclose that data. I let people know up front that we may find those sort of incidental findings, and I ask them if they want to know. To me, that’s the way to do it, to let people know up front that they may have things that may be inherited in their germline. But, again, I think that we’re slowly coming toward agreement, as a medical society of oncologists and geneticists, toward how to handle this.

Generally, the way I do my communication is through my y genetics group. They have a lot of experience. We tend to try to have a genetics group involved. In other words, it really is going to depend on what the mutation is, and what the gene is, and what their risk is. For BRCA1 or BRCA2, for a family member at risk, and they’re young and they chose not to have a bilateral mastectomy, for example, we potentially do MRI screening. I think for someone at risk for other mutations, there may be another set of screenings, maybe frequent colonoscopy, maybe CT. There’s a lot of various ways that we do screening, and it really is gene-dependent. But, generally, I try to get my genetics experts involved early on in the process.

Transcript Edited for Clarity
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