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Fresh Voices Needed for Genetic Debate

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The subject of genetic testing, and how its results should be used, is a controversial one. Members of the CIA have already contributed to the debate, but more voices must be heard—and yours could be among them.

One of those already involved in such conversations is Stuart Wason, FCIA, a past President of the CIA. Representing the Institute, he recently participated in a round-table discussion on genetic testing and insurance, organized by the Office of the Privacy Commissioner (OPC) to hear opinions from all those interested in the question of whether Canada needs laws governing the privacy of individuals’ genetic information. You may have also noted in recent weeks a series of articles on the topic of genetic testing published in the Globe and Mail newspaper.

Some proponents of such privacy restrictions believe that if insurers discovered that a potential customer possessed the same genetic mutation that killed one of their parents (for example, Huntington’s disease), the company would not provide any coverage—so-called "genetic discrimination". Groups like the U.S. National Human Genome Research Institute also believe that without legal safeguards, managers could use genetic profiling to screen current or future employees, leading to the kind of discrimination that has already been outlawed in areas like race, age, or sexuality.

Conversely, some of those opposed to restricting the use of genetic information believe that most instances of the alleged discrimination are undocumented and may be more perceived than real. An article on the British Medical Journal website said that such prejudice from insurers would be unlikely:
". . . companies won’t be able to penalise people with a certain gene unjustly for fear of being priced out of the market . . . If some people pay a higher premium because of their genetic inheritance, then that’s not necessarily unjust: they often pay a higher premium for many insurance products because they represent a bigger risk. At the same time, a market will grow up to serve that particular section of the community, just as there are car insurance firms that specialise in different demographic groups."
Other critics of privacy regulations believe that making genetic information publicly available will enable gene science to advance faster, and thereby help patients in need. According to scientist Timothy Smith of the Human Variome Project:
"More than ever before, we’re living in a world where our individual genetic makeup will determine the course of the medical treatment we may undergo. We may all be the eventual recipient of possibly life-altering medical intervention that’s based on the insights collected from someone else’s unique genetic sequence. Without the free and open sharing of information on genetic variations, we may be withholding treatment from people who are already suffering."
The OPC has released papers on this subject, and as far as the papers’ authors are concerned, a ban on the use of genetic information by the life and health insurance industry "would not have a significant impact on insurers and the efficient operation of insurance markets."

The OPC’s views were among those presented at the round-table discussion, which included insurers and other experts. Following the debate, Mr. Wason said: "The papers were well prepared and fair in their comments, including references to actuaries. I would characterize the session as part an information-gathering process by the OPC. The questions seemed fair, although many reflected a desire to understand the fundamentals insurance systems and underwriting."

"It seemed to be well understood by the participants that there are relatively few causes of death for which a genetic marker is the prime determinant of the individual’s lifespan. For many causes of death, lifestyle and family history are a far greater determinant."

There were no significant contentious issues brought forward, although I sense the OPC is considering how other countries are addressing the use of (and possible restrictions on) genetic testing information.."

In 2000, the CIA published a statement on genetic testing and insurance, which said that "while additional genetic information may be of some assistance to insurers in accepting insurance, the vast majority of people applying for life or medical insurance would still be accepted as standard risks . . . For those risks that are not standard, much of the information that could be provided by today’s genetic testing is available through conventional questions about medical and family history, and is already being factored into traditional underwriting."

The statement concluded: "The CIA does not support mandatory genetic testing for insurance, nor the disclosure of test results without an individual’s authorization. However, the CIA believes that should genetic test results be available, the results should be shared between both parties of an insurance contract (policyholder and insurer)."

Given the ongoing development of genetic science, the development of societal values, and the implementation of privacy regulations in various jurisdictions in the 12 years since that statement was published, it is a good time for the CIA to consider the need to update its statement.

If you are interested in being involved in a potential new task force to work on a statement concerning genetic testing, please contact CIA resident actuary Chris Fievoli at chris.fievoli@actuaries.ca.
 

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