The Equal Employment Opportunity Commission has become thefirst federal agency to outline a specific policy dealing with thepotentially explosive ethical, legal and social issues surroundinggenetic testing.
In its most recent guidelines for compliance under the Americanswith Disabilities Act of 1990, the EEOC said a person with a geneticprofile showing a susceptibility to an illness is protected againstdiscrimination.
"This is good news," said Philip Reilly, of the Shriver Center forMental Retardation in Waltham, Mass. "But I'm cautious about theimplications for two reasons. People still must prove that they wereregarded as disabled and that they were discriminated against becauseof genetic predisposition. Just because the EEOC issues a rulingdoesn't mean the courts will agree."
Reilly, of the Shriver Center's Division of Social Science, Ethics andLaw, said the EEOC's move also represents a rare instance of publicpolicy leading technology.
"Usually, technology and science run ahead of ethics," he observed,"but here the ethical discourse has been so widespread that beforegenetic testing is broadly available we have a ruling in anticipation ofit."
Ann Merrifield, vice president of marketing and businessdevelopment at Integrated Genetics Inc., called the EEOC guidelines"very positive" and said they "set out a policy and principle" thatcould be extended in preventing use of genetic data to determineaccess to health insurance.
But Merrifield, whose Framingham, Mass.-based company isdeveloping genetic tests, added that legal risks won't limit genetictesting as much as medical considerations.
David Singer, president and CEO of Santa Clara, Calif.-basedAffymetrix Inc., agreed with Merrifield, saying that whileemployment and health insurance concerns are important, they areside issues to clinical applications of genetic tests.
"Genetic tests are in the very early stages of development," Singersaid, "and it will be years before we can use them."
When they are widely available, Singer observed, "These tests will beused for medically important purposes with incredible benefit."
David Fram, EEOC policy attorney, said employers cannot conductmedical tests nor can they gain access to medical records forapplicants until an employee is offered a job. Then, even if a geneticpredisposition to a disabling illness exists, the job offer cannot bewithdrawn.
The EEOC used the example of people whose genetic profiles showsusceptibility to colon cancer and who are asymptomatic. Anapplicant cannot be disqualified "because of concerns . . . aboutproductivity, insurance costs and attendance," the agency said.
However, Fram added if people's genetic profiles expose them to a"direct threat" based on the type of work they would be doing, a joboffer could be withdrawn when no reasonable accommodations arepossible to offset the potential harm.
Fram speculated the major battles over genetic testing in the workplace, likely, will be fought over "direct threat" issues.
Mark Rothstein, a University of Houston Law School professor,worked with the EEOC on the genetic profile guidelines.
"This is a start," Rothstein said, "but it's only a first step" in definingpublic policy to protect against discrimination based on genotype.
Employers are unlikely to conduct genetic tests on their own, he said,because of the expense. But they could get genetic information fromapplicants' medical histories.
"One of the things we find is that people at risk of genetic diseasesare reluctant to be tested because employers will have access tomedical records and they worry they will be denied employment andinsurance," Rothstein said.
The EEOC's ruling, he added, may encourage more people to betested.
Although the EEOC is the first federal agency to tackle theimplications of genetic testing in a policy statement, a handful ofstates have passed laws precluding health and life insurancecompanies from using the technology to determine coverage.
At least 12 other states are considering bills to regulate genetictesting by the insurance industry, said Reilly. In Congress, heobserved, federal bills dealing with genetics and privacy issues havebeen introduced as far back as 1989, but none has passed.
The National Center for Human Genome Research in Bethesda, Md.,which oversees U.S. efforts on the Human Genome Project, recentlycreated a task force on genetic testing. The 19-member group held itsfirst meeting in Baltimore Thursday and Friday.
Singer, who is representing the genetic test manufacturers on the taskforce, said the group will conduct a two-year study to developpolicies for the safe and effective uses of genetic-based diagnostics.The policy recommendations, he said, will cover everything fromperforming genetic tests to educating consumers.
Neil Holtzman, professor of pediatrics and health policy at JohnsHopkins Medical Institutions in Baltimore, is chairman of the taskforce.
Genetic testing issues to be explored by the task force includeaccuracy and reliability of the technology as well as the potentialmedical interventions or preventive measures available ifpredisposition to a disorder is discovered. n
-- Charles Craig
(c) 1997 American Health Consultants. All rights reserved.