New genomic technologies offer great promise for better diagnostic tests and treatments for many conditions. But they also pose new ethical questions - ones physicians and patients must address when making decisions about medical care. For example, genetic tests can determine if a couple is at risk of having a child with a genetic condition. New genetic tests can also more accurately tell parents during pregnancy if their baby has a genetic condition.
How do we ensure that every patient has access to these tests? What can physicians do to guide parents as they consider genetic testing and how can they support parents who learn their baby has a genetic condition? According to Megan Allyse, Ph.D., these questions are at the center of her research on reproductive health in the Mayo Clinic Center for Individualized Medicine Bioethics Program.
“Mayo Clinic is a leader in genomic and reproductive medicine. So as a bioethics researcher, I have had the opportunity to collaborate with leading physicians and scientists on important ethical issues in reproductive health. We’re identifying areas for improvement in patient care and developing solutions to address unmet needs,” says Dr. Allyse.
Dr. Allyse works closely with physicians in the Mayo Clinic Department of Obstetrics and Gynecology to address ethical questions that have no easy answers and are at the heart of individual decisions on personalized medicine.
For example, patients may ask:
When testing reveals a genetic disorder – providing support and access to care
Dr. Allyse and her research team want to provide support for parents who learn through genetic testing that their baby has a genetic condition. Some patients with genetic disorders and their families have difficulty accessing the right medical care, such as genetic counseling services or developmental pediatric specialists. They may also suffer from discrimination or social stigma when they try to get access to special services for their child.
“Our research shows that some parents receive the news that their baby has a genetic condition in a way they feel is traumatic, with few resources to cope with the diagnosis. It is essential that we provide access to genetic counseling, early access to the right medical care and better social support for these young patients and their parents,” says Dr. Allyse.
Getting the word out – information is the key
According to Dr. Allyse, many providers and patients don’t have the information they need when making decisions about reproductive health, especially those involving the use of newly developed genetic tests. That’s why she and her team are working to get the word out about what options are available.
For example, Dr. Allyse and her colleagues recently collaborated with the American Society of Human Genetics to develop physician training about cell-free DNA tests, a new blood test that can screen a fetus for genetic conditions.
“The training helps physicians understand and counsel patients on the benefits and limitations of the test. They also learn how to interpret and share results with patients. This is especially helpful to providers who may not have access to genetic specialists within their own clinic or community,” says Dr. Allyse.
Register to attend Individualizing Medicine 2017 and learn more about pharmacogenomics
Join us to learn more about bringing precision medicine into practice, including sessions exploring bioethical issues, at Individualizing Medicine 2017: Advancing Care Through Genomics.
The Mayo Clinic Center for Individualized Medicine is hosting the sixth annual genomics conference October 9–10, in Rochester, Minnesota.
Explore all conference offerings:
Mayo Clinic Center for Individualized Medicine is hosting the conference with support from the Jackson Family Foundation.
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