Discussion centers on genetic ethics questions
With progressive technological developments in genetic screening and gene therapy on the horizon, four students from the University’s Master of Science in Genetic Counseling program discussed the perceptions and ethical concerns regarding their profession as part of ’DEIS Impact on Thursday.
“People have 25,000 genes that code for one to multiple functions …. the three pillars of genetic counseling are to create awareness of knowledge of genetics, to respect the sensitivities of patients and attitudes of clients and to inform people with the fullest possible genetic information that we have at the time,” explained Meera Clytone.
However, “as genetic knowledge increases, there becomes the concern of how much information is too much,” said Clytone.
New clinical services have greatly expanded the information that can be given to a patient. Whole exome sequencing, collected through a blood sample, can identify an individual’s entire genetic sequence — or life blueprint — which is then screened for mutations that could explain the patient’s disorder.
“It’s kind of a ‘Hail Mary pass’ in genetics,” said Kathryn Schwarting, used when counselors have already tried a series of selective screening and elect this final option to screen everything.
However, “We find out information we sometimes weren’t looking for, called “incidental findings” — and the question becomes, ‘Well, what do we do with this information?’ Do we tell the patients? And what do patients do with this information?” said Schwarting.
In other instances, a genetic counselor may also find “variants of uncertain significance,” which may have no guidelines in place, yet “the patient has the right know of such risks,” said Aman Mann.
Stephanie Laudisi spoke on prenatal screenings and the ethics regarding termination of pregnancies under early identified disorders.
“You may have heard of [noninvasive prenatal testing] as the gender test, but it’s much more than that. … It’s not just a test where we’re finding the gender — this has a lot of implications,” said Laudisi.
Similar to whole exome sequencing, NIPT may tell parents about any predisposed genetic disorders and also about general characteristics and features about their future child. Whether parents elect to continue pregnancies or termination of pregnancy based on this information, Mann said, will increasingly challenge people to take into account “what disability is [considered] a disability.” There is a large ethical debate surrounding the point at which the line should be drawn for intervention, Mann said.
Laudisi emphasized that it is a genetic counselor’s role to be nondirective. “Our job is not to tell the patient what to do. Our job is to provide enough information for the patient to make an educated decision for themselves and then to support them through that process.”
Additionally, panelists discussed accessibility inequities, as current diagnostic testing and treatment pathways often come with a large price tag.
“We’re talking about genetic counseling in the traditional sense, which is in the clinic, … and now there’s just this explosions of [genetic counselors] working in laboratories, for insurance companies, or in marketing,” said Laudisi. Thus, demand for these services is increasing and requiring education and exposure among the general public Laudisi concluded.
“There’s definitely a need out there, and hopefully as more people are aware of the profession and what, as a profession, we have to offer with these new technologies and all ethical concerns we talked about, we hope to address as the healthcare field in general and then as genetic counselors, as well,” concluded Mann.
The event was sponsored by the Brandeis chapter of United Against Inequities in Disease as a part of the ’DEIS Impact festival for social justice.