Do you turn to friends, family or even professionals for advice before making a tough decision? We do too!
When people face tough decisions, they sometimes turn to friends and family, their church or maybe a counselor or other professional to help them decide what to do.
At the MyCode Community Health Initiative we do the same. The professionals we consult are top-level ethicists and academics, but the friends we consult include people just like you.
A MyCode Ethics Advisory Council was created prior to the beginning of DNA sequencing in 2014 and it has been operating ever since. It is formed of eight members, none of whom is an employee of Geisinger or Regeneron, our partner in the MyCode ‘DiscovEHR’ project.
From the Geisinger community, the ethics advisory council includes:
- Mary Louise Schweikert, a patient-community representative from Mifflinburg;
- Sara Kirkland, a patient-community representative from Lewisburg;
- Raven Rudnitsky, a patient-community representative from Selinsgrove;
- and Tom Shannon, of Eagles Mere, a patient/community representative and liaison to the Geisinger Medical Center Hospital Ethics Committee
“The community members offer us a crucial perspective,” said F. Daniel Davis, Geisinger’s chief bioethics officer. They give us a ‘read’ on how issues and questions appear out in the ‘real world.’ Their views help to add real world context to those of the ethics professionals serving on the council, he said.
In addition to the community members, the council includes four individuals with expertise in genomics, genetics, and ethics. One of these members, Kevin T. FitzGerald, serves as chair.
FitzGerald is a Georgetown University-based Jesuit with doctorate degrees in molecular genetics and bioethics. Joining him on the council are:
- Sylvia Mann, a respected genetic counselor who leads the genetics program within the State of Hawaii’s Department of Public Health.
- Kyle Brothers, a pediatrician and ethicist from the University of Louisville; Dr. Brothers is a key contributor to the scholarly debates and literature on genomics and ethics.
- Dena Davis, who is on faculty at nearby Lehigh University where she is a professor of religious studies with specific focus is on the ethics of genetic medicine and genetic research.
Together, these experts and lay people have helped guide and inform Geisinger’s decision-making on several important issues already. In the beginning, for example, they helped with the drafting of a consent form for MyCode participants.
The council helped to ensure that the form was written in simple language so that it could be understandable to anyone in any part of our community.
But that is not all. The council has also grappled with some meatier issues too.
The council tackled the questions and issues involved in giving DNA results to children and adolescents for disorders (BRCA and Lynch syndrome) that don’t occur until well into adulthood. The council said that this should only be done when psychological and emotional support for the participants and their families is available.
Another example: What to do with a DNA result for a patient who has died after the test was administered, but before the results came back showing a genetic condition.
The council weighed in on the discussion of whether Geisinger should contact the next of kin about the genetic defect found in the deceased. Since genetic conditions are inheritable, the genetic result found in the deceased family member could also be present in surviving family members.
The council helped Geisinger’s MyCode leadership develop the policy surrounding when and how to return results in these unusual cases.
The council have helped us clarify the ethical challenges of what we’re doing and they’ve helped us develop and deploy strategies for meeting those challenges, Dr. Davis said.