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Ban Genetic Discrimination - AMA Speaks Out - May 5, 1997

As scientists continue to discover new genes, our genetic makeup becomes less and less of a mystery....soon, EVERYONE will be able to know what genetic diseases they might have at some time during their lives....this is an important article which appeared in the The American Medical News, American Medical Association, May 5, 1997, Volume 40, Number 17, entitled "Ban genetic discrimiation?"--Congress eyes plan to prevent denial of health insurance....by Geri Aston, AMNEWS Staff

This is your opportunity to contact your political representatives and let them know your feelings about genetic testing and the importance in particular of HH testing and that it can SAVE the patient's life, not DOOM it (as many other genetic tests unfortunately do)....people NEED to be screened for hereditary hemochromatosis by DNA testing....but some patients are afraid to be tested this way for fear of genetic discrimination....This fear needs to be abolished so that patients can get the proper DNA screening that they need.

Sandra Thomas, President, American Hemochromatosis Society

Ban genetic discrimination? Congress eyes plan to prevent denial of health insurance
By Geri Aston, AMNews staff. May 5, 1997.

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WASHINGTON -- Sharon Ritter's three aunts died of breast cancer, and her mother has had preventive surgery to avoid the disease.

But when given the chance to be tested for a genetic predisposition to breast cancer as part of a National Institutes of Health research program, the 36-year-old Virginia resident turned the opportunity down.

Why? Her fear that if she tested positive, a health insurance company might one day use the results to deny her or a family member coverage.

Ritter, a married mother of two, is her family's source of health insurance. And although she feels secure in her insurance benefits as a federal employee, she knows there's no guarantee she'll always work for the government.

"It's a double-edged sword, this information," Ritter said. "It can help you, but it can hurt you. I'm not willing to have my family be uninsured."

Ritter knows her decision not to get tested limits her opportunities for preventive measures.

"I feel the risk is greater for my family than for me," she said.

Clash over genetic discrimination

Fueled by concerns such as Ritter's and that insurers do deny or limit coverage based on genetic information, momentum is building in Congress to prohibit the practice.

Meanwhile, insurance groups fiercely oppose legislation that would limit their ability to use genetic information to assess insurance risk.

"There is going to be a direct, head-on clash on this issue," predicted Linda Emanuel, MD, the AMA's vice president for ethics standards. "The dilemmas raised by this bring us back to the root question of what is the appropriate form of health care coverage for our people in this era of genetic medicine."

Lawmakers in both the House and Senate have introduced several bills that would ban what they call genetic discrimination by health insurers, and the House Commerce Committee has appointed a task force to investigate the issue.

"We want to make sure the social policy keeps up with the science," said Rep. Louise McIntosh Slaughter (D, N.Y.), who sponsors legislation that would ban health insurers from using genetic information to set rates or deny coverage.

That science is advancing at an astonishing rate. The Human Genome Project discovers new disease genes almost weekly and may reach its goal of sequencing all the DNA in the human genome before the target year of 2005.

Once a gene tied to a disease is discovered, it is often only a matter of months before a diagnostic test for it is developed, according to the National Center for Human Genome Research.

Genetic feats once only possible in the realm of science fiction have become reality as scientists this year succeeded in cloning a sheep and creating the first artificial human chromosomes.

New law not strong enough

While this progress holds out hope for prevention and perhaps one day even a cure for genetic ailments, it also intensifies concerns about the potential for abuses of people's genetic data, said lawmakers as well as genetic researchers and ethicists.

"This could possibly be the civil rights issue of the next millennium," said Rep. Cliff Stearns (R, Fla.), who leads the Commerce Committee's genetics task force.

Stearns said he will hold three hearings on the ethical, legal and social questions surrounding genetic advances with an eye on protecting privacy rights and preventing discrimination. He plans to then introduce new legislation on the issue.

"We've got to push the edge and get [congressional] leadership to understand that we have to put this stuff in place because it's going to be coming through the courts," he said.

Although the Kassebaum-Kennedy health insurance reform law provides new protections regarding genetic information, some lawmakers and experts in the genetics field believe it does not go far enough.

The new law prevents group health plans from using genetic information to determine insurance eligibility or to set preexisting medical condition coverage exclusions.

But it doesn't help people whose employers don't offer insurance coverage, Slaughter said. In addition, the law's provisions guaranteeing insurance eligibility for certain people who move from the group market to the individual market doesn't limit premium charges, she noted. So insurers selling individual policies could charge unaffordable rates to people with a genetic predisposition to an illness, she said.

The law also doesn't prevent plans from requiring genetic testing, excluding all coverage for a particular condition, or imposing lifetime caps on all benefits or specific benefits, added Karen H. Rothenberg, a University of Maryland law professor who chairs the National Action Plan on Breast Cancer working group on hereditary susceptibility.

"It's only as good as your insurance is," she said.

A flurry of bills aim to close some of these loopholes.

Slaughter's proposal and its Senate companion bill, offered by Olympia Snowe (R, Maine), would prohibit both group and individual plans from requiring applicants to disclose their genetic information. Legislation by Rep. Gerald Solomon (R, N.Y.) would do the same.

The Slaughter and Snowe measures also would prevent all plans from denying, canceling or refusing to renew coverage and from varying insurance premiums, terms or conditions based on genetic data.

"The only thing I want is to make sure the American consumer is protected from losing their health insurance because of their genetic makeup," Slaughter said.

Slaughter's and Snowe's bills would prohibit Medicare supplemental insurers from denying beneficiaries coverage or charging them higher premiums based on their genetic data. A similar provision is included in House and Senate medigap reform bills.

And Sen. Pete Domenici (R, N.M.), who championed last year's successful maternity stay and mental health parity legislation, recently introduced a genetic information privacy measure that includes bans on employer and health insurance discrimination based on genetic data.

Privacy concerns well-founded

The stakes go beyond simply protecting people's access to health insurance, according to legislation proponents. The lack of safeguards preventing discrimination could endanger genetic research by causing people at risk of genetic diseases to shy away from studies, they say.

Many people, like Ritter, who are at risk for genetic ailments, also may avoid testing for fear of discrimination, thus placing their health at risk, proponents say. That reluctance could change, however. "If the Slaughter legislation went through, I'd be right out there getting tested," said Ritter.

Recent studies show that many Americans, especially those most at risk of genetic disease, are concerned about the privacy of genetic data and the possibility of discrimination. Some surveys also show that their concerns may be well-founded. For example:

•According to a nationwide AMA-sponsored survey of 1,000 people conducted in February, 75% of Americans would be tested for one or more specific genes, but 81% would be concerned about the privacy of that information. In a study published in the June 26, 1996, Journal of the American Medical Association, 43% of the 279 people at risk for a genetic predisposition to breast cancer who were surveyed requested their test results. The possibility of losing health insurance was considered a risk by 34% of respondents. •Of the 917 members of genetic disease support groups surveyed in a study by researchers from Harvard, Stanford and the University of Massachusetts published last year in Science and Engineering Ethics, 455 reported that they believed they were subject to genetic discrimination by such organizations as health or life insurers, their employers, health care providers, the military or schools.

Researchers believe the studies, though based on people's perceptions, point to real abuses by insurers.

"[Respondents] told us many stories about their experiences that are convincing to me," said E. Virginia Lapham, PhD, one of the Georgetown study's researchers and principal investigator at the university's Human Genome Education Model Project.

Insurers oppose new legislation

But insurance groups doubt the validity of the research and oppose legislation preventing them from using genetic information in the individual insurance market.

"These are surveys and not studies," said Richard Coorsh, spokesman for the Health Insurance Assn. of America. "People are asked about their perceptions. People perceive one thing, and reality may be something else altogether."

Both the HIAA and the Council for Affordable Health Insurance say genetic discrimination by health insurers is not widespread.

The two groups argue that in the individual market, health insurers should be able to use genetic data like other medical information to determine their risk and set prices accordingly.

Many insurers already use predictive information, such as weight or cigarette smoking habits, to determine rates, said David Lack, the insurance council's president. "Why should genetic information be any different?"

The legislation could lead to situations in which people would test positive for genetic predispositions to diseases and then run out to buy health insurance without any obligation to tell insurers of the risk they would assume by covering them, he said.

If insurers aren't able to use all medical information available to determine risk and set prices, they could incur losses when those individuals get sick, according to Coorsh. This would fuel insurance rate increases, he said.

Because the individual market is so price-sensitive, the resulting premium increases would cause many people to drop their insurance, Coorsh said. This would lead to a "death spiral" of rising rates and shrinking enrollment, he said.

Charges of cherry-picking

Legislation supporters have little sympathy for insurers' arguments.

"If they know all the information, they can cherry-pick," Stearns said.

"Insurance is a gamble, and they need to take one, too," Slaughter added.

Preventing insurers from using genetic information to determine prices or eligibility would not increase their insurance risk beyond what it is currently, several researchers said.

"These are the people you're covering now," said Claudine Isaacs, MD, assistant professor of medicine and medical director of a genetic testing program at Georgetown's Lombardi Cancer Center. "We all have preexisting conditions based on our genetic information."

Since virtually everyone has gene mutations that predispose them to certain illnesses, "if insurers started discriminating against us because of it, they wouldn't have a market," Rothenberg said.

In light of the controversy over genetic information, many researchers said physicians need not only to become more knowledgeable about the evolving science, but also about the discrimination risks so they can adequately counsel patients who are considering testing.

Toward that end, the AMA and the American Nurses Assn. are co-chairing the National Coalition for Health Professional Education in Genetics.

"It's something people realize needs to be a thrust," Dr. Isaacs said.

Banning genetic discrimination

The Human Genome Project's Working Group on Ethical, Legal and Social Implications, in partnership with the National Action Plan on Breast Cancer, have developed recommendations to ban genetic discrimination in health insurance and employment.

They suggest that health insurers be:

  • Prohibited from using genetic data or an individual's request for genetic services to deny or limit coverage, or to establish eligibility, renewal or contribution requirements.
  • Prevented from establishing different rates based on genetic information or the request for genetic services.
  • Prohibited from requesting or requiring collection or disclosure of genetic information.
  • Banned from releasing genetic information without the individual's prior written authorization, which should be required for each disclosure.

And that employers be:

  • Prohibited from using genetic data in deciding whether to hire or fire someone or to set the terms, conditions, privileges or benefits of their employment unless they can prove the information is job-related.
  • Banned from requesting or requiring the collection or disclosure of genetic information prior to a conditional offer of employment unless they can show that the data is job-related.
  • Required to obtain written informed consent for the request, collection or disclosure of genetic information from an employee and for releasing that information to a third party.
  • Restricted from access to genetic information in employee medical records, insurance claims or other sources.
  • Subject to strong enforcement mechanisms, including private right of action, for violating these provisions.

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Contents Copyright 1997 American Medical Association. All Rights Reserved.