Advancements in genetic medicine have opened many possibilities for what can be discovered. While this unlocks countless doors into improving patient care and quality of life, there is also room for much ethical deliberation.
Where do you draw the line? Is there a line at all? Is the line communal or personal? These are difficult questions that are hard to answer. Each person is unique, with a different history, opinion and set of beliefs.
A time for exploration
On Sept. 11 at 7 p.m. at the Sanford Imagenetics courtyard in Sioux Falls, South Dakota, Sanford Health experts are having a conversation with the community to address these very valid and challenging questions. Join Kristen DeBerg, MS, a certified genetic counselor, Gretchen Spars, M.A., an ethicist, and Jordan Baye, Pharm.D., a pharmacist, for:
- A discussion of ethics and genetic medicine
- A group conversation on specific scenarios and case studies
- A period for questions and answers
An ethical dialogue
Now that we can with increasing chance of success use new technology to prolong life or change the ordinance of life to be, the question for many individuals is ‘should we?’ And, must we always? Often, patients wrestle through personal conflicts as they try to understand why someone else would or would not do genetic testing,” Spars says. “People start asking questions of right and wrong. And what I do as an ethicist is facilitate discussion to prompt critical thinking and broaden understanding beyond right and wrong.”
“As a genetic counselor, we also aren’t there to say if a decision is right or wrong,” DeBerg adds. “We are there to provoke thought. We want our patients to think about all angles ahead of time and make the best decision for their needs.”
Patients and families have many reasons for completing genetic testing. This can be due to a family history of a certain condition, symptoms that occur in a family member, in response to screening or genetic testing, or something completely unrelated. Additionally, genetic testing can occur at any age, even before a child is born.
“At this discussion, we are going to help people consider what these things mean personally and ethically. Our goal is to make sure there is the opportunity to ask questions, get answers and consider how this information affect their lives,” Baye says.
A hard choice
“Whether or not to complete genetic testing is a difficult decision,” says DeBerg. “The family dynamics can get very complicated. For example, there can be an adult child interested in testing and a parent who is not. Maybe a parent has a hereditary heart condition; the parent is the best option for testing but may not want to get tested. So, the adult child needs to complete additional screenings throughout his or her life due to family risk, and some of that may be unnecessary. Because if a parent carries a variant, predictive testing could see if the child was also at risk for the disease associated with the genetic variant.”
Ethics is always a part of the conversation in genetic medicine. From processing the effect of the results to the fear of discrimination and more, doctors and genetic counselors at Sanford Health work through each question, fear and possible outcome with patients.
Sanford Health also has a team of ethicists as a resource to patients, families, and the health care team and able to offer consultation. The Sanford Health Biomedical Ethics Committee, an interdisciplinary team of hospital and community members, support the ethicists in case consultation and to consider effective strategies and policies to improve the health care experience.
A list of concerns
“Privacy is often a big question. ‘What happens with these results?’ ‘Are they going to be private?’ ‘Do they get sent to insurance or my employer?’ To add a layer, there are times when a patient is looking for gene X, but genetic testing finds the patient has gene Y, which the patient was not looking for,” says Baye. “There’s always a risk of incidental findings. So the issue becomes what do we do with those results and how can we as a health care system make sure we are not leading patients down the wrong path.”
“Patients having the right to decide for themselves,” Spar adds. “That is at the forefront of conversations regarding privacy and confidentiality. We consider this on every level because the information from genetic testing can really impact a patient’s life. This is knowledge we cannot change. We want to ensure patient autonomy and that they are provided every opportunity to be informed.”
More information about genetic medicine