The CRISPR Revolution and Genetic Counseling
Scholarship by Professor Bret Asbury
Scientific breakthroughs that are poised to let doctors treat or prevent thousands of diseases caused by genetic abnormalities pose new questions, both for professionals who provide prenatal genetic counseling and for policymakers.
The discovery that genes can be edited through Clustered Regularly Interspaced Short Palindromic Repeats, or CRISPR, has generated tremendous excitement in the scientific community. CRISPR can alter, delete or rearrange the DNA of living organisms, allowing scientists to thwart a long and growing list of disorders that include sickle-cell disease, HIV, hemophilia B and Huntington’s disease.
These exciting developments coincide with a growing awareness that genetic counselors tasked with advising expectant mothers who carry genetically abnormal fetuses about the medical and developmental challenges that await their child and family often, if unintentionally, provide incomplete, selective or biased information.
Bret Asbury, professor of law and associate dean for faculty research at Drexel’s Kline School of Law in Philadelphia, explores these phenomena and considers implications for the future in an article published in the Stanford Technology Law Review.
In “Counseling After CRISPR,” Asbury cites a body of literature surrounding the current state of genetic counseling. Research has determined that genetic counselors often fail to provide “nondirective” information to pregnant women, struggling to deliver comprehensive information uninformed by social values under short time constraints to clients who are often hungry for clear advice and who vary in their capacity to process complex information.
Because the information genetic counselors provide is already subject to misunderstanding, Asbury notes, the coming tsunami of fast-changing information about genetic interventions that could cure or mitigate diseases will complicate efforts to provide unbiased information and facilitate truly informed reproductive choices.
Furthermore, Asbury notes that CRISPR may upend the binary decision-making that has guided genetic counseling to date: should a mother terminate a pregnancy or not? To the extent CRISPR can produce safe and low-cost advances that serve the best interests of fetus and mother alike, Asbury observes, it would shine a different light on the requirement to provide nondirective information.
The article also explores questions CRISPR raises for legislators, who have enacted laws over the past decade aimed at defining the type of information genetic counselors provide and the manner in which they share it. Though state and federal initiatives have been inconsistent and frequently unenforced, Asbury notes that the promise CRISPR holds also raises important questions as to future subsidies to access genetic interventions to treat prenatally diagnosed conditions.