U.S. Representative Louise Slaughter (D-Fairport) addressed scientists and privacy activists at Strong Memorial Hospital about genetic discrimination on Friday, Jan. 29. Slaughter authored a bill that recently outlawed the practice after 13 years of failed attempts.
The act, which will go into effect this November, prevents insurance carriers from marking up a client’s rates if new genetic technology reveals a predisposition for a disease or condition. It also protects employees from discrimination based on their genetic makeup.
Despite nearly universal support from Congress and former president George W. Bush, a single senator prevented the chamber from voting on it for years.
‘You can’t help what genes you’re born with,” Slaughter said. ‘When you think of the fact that everything about us is genetically made, think of the possibilities.”
DNA technology has become a booming field in recent years, as researchers have raced to map the human genome.
It has enabled people to find out more about themselves than ever before, informing them of hereditary risks and other hidden conditions potentially allowing doctors to use preventative medicine rather than costly and more dangerous treatments down the road.
‘We need to be keeping people well instead of just treating them when they’re sick,” Slaughter, who worked as a microbiologist before going into Congress, said.
More than 1,200 medical conditions can be detected with existing tests. Some patients have resisted genetic testing under the belief that if they learned something negative, insurance companies might be able to increase rates.
‘People were terrified to even ask their doctor about [genetic] testing, because they were afraid of discrimination,” Slaughter said.
Group carriers, an insurance plan used by most insurance companies, already prohibited taking genetic makeup into consideration, but Slaughter’s bill extended protection to everyone.
Slaughter said the medical community has been quiet about the bill, which surprised Strong employees who overwhelmingly supported it. Some Strong employees wondered if the act could make their jobs more complicated, as they said the 1999 Health Information Privacy Act had. This prompted a UR scientist to ask whether the rapidly proliferating genetics industry should be regulated Slaughter agreed that it should be.
The bill stalled in Congress for 13 years due to procedural mishaps and the obstruction of one senator, Tom Coburn (R-Oklahoma).
For much of the last congressional session, Coburn used parliamentary procedures to single-handedly block the bill from coming up for a vote. Slaughter has questioned his actions.
The senator is a physician and sits on the Senate committee dealing with health and education.Health care workers and insurance executives have both been among Coburn’s strongest supporters.
‘It was just his personal bias,” Slaughter said. ‘I hope the Senate changes those rules,” Slaughter said, noting that, until last year, the holds were anonymous.
Slaughter expressed her discontent with Coburn’s actions. ‘He shouldn’t be trying to practice medicine while serving in Congress.”
The Senate unanimously passed the bill twice, and the House passed it with only three dissenters. However, due to the timing of the votes, a joint resolution was never issued. ‘He would hold up to 85 [bills] and just not turn them loose.”