Guest Post: Genetic Advisory Board, by Rep. Amy Arata
Long after the legislature had adjourned for the year, New Gloucester’s legislators, Sen. Ned
Claxton and Rep. Amy Arata, were still hard at work in Augusta. They were both appointed to the “Advisory Panel to Better Understand and Make Recommendations Regarding the
Implications of Genome-editing Technology for the Citizens of the State”. That’s quite a
mouthful, but the members on the panel were eager to dig into the science and, in their words, “nerd out”.
The title may sound ominous, bringing up images of Star Wars’ clone army, but at the first
meeting, Dr. Nirav Shah assured the panel that changing human genes that will be passed to
future generations is both illegal nationally and condemned as unethical by scientists world-wide. This is not only due to possible health risks it could cause, but also due to the possibility of eugenics, which was a pseudoscience embraced by many organizations worldwide, including the Nazis, to justify discrimination of those deemed “less fit”. What this panel would be discussing is genome editing in adult (somatic, not germ-line) cells only, for the purpose of treating or curing diseases.
There were fascinating presentations from institutions that included Tufts University, Jackson Laboratory, the University of Maine, and several others. The presentations are available here: https://legislature.maine.gov/genome-editing-technology-advisory-panel
The last meeting was held on Wednesday, Oct. 19, and several recommendations were made
and issues discussed. One issue concerned medical privacy. Should life insurers be able to
access medical records that include genetic information? If a patient has this information and finds out that her life may be cut short, is it fair that she can buy life insurance at the same rate as everybody else? Would that disrupt the insurance market so that eventually nobody could afford life insurance? Conversely, if people fear that their genetic information could be used against them, will they avoid genetic testing that could save their lives? Maine already prevents direct-to-consumer genetic tests (such as 23andMe) from being shared with insurers, and the state of Florida recently made it a felony for insurers to discriminate based on genetic information. It will be interesting to see how this impacts the life insurance market in Florida so that Maine can learn from their experience and pass practical legislation.
The panel also made recommendations that the Rare Disease Advisory Council include a
member who has a single-gene disorder, or is the parent of a child with such a disorder, and that they consider genetic therapies’ costs and impact on quality of life. The panel also urged the Office of Affordable Health Care to examine the future costs and possible savings due to genetic therapies. Other recommendations included more study of licensing of genetic counselors, more advanced genetic instruction resources for teachers, and more cooperation between educators and laboratories in Maine.
New Gloucester should be very proud that their legislators were appointed to such a unique
panel. It was non-partisan and productive, and will hopefully aid Maine as we enter the
promising future of genetic medicine. Sen. Claxton is retiring from the legislature, and it was a positive ending to his tenure, which allowed him to embrace his unique talents in service to his district. Representative Arata has enjoyed working with him on this and many other projects, and will miss teaming up with Sen. Claxton to represent New Gloucester well.
*This is a guest post by Rep. Amy Arata. The views expressed are those of Rep. Amy Arata, and not endorsed by the New Gloucester GOP. The New Gloucester GOP supports the right of individuals to submit guest blog posts freely, and without censorship. If you are interested in sharing an article, or post please send all submissions to email@example.com