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Genetic testing is all in the family
The recent announcement trumpeting the completion of the initial map of the human genome has led to hopeful predictions about the future of genetic medicine, including a whole range of new genetic tests and eventual genetic therapies. As more of the genome's meaning is unraveled, the knowledge created will allow us to test for diseases that may strike us and our offspring in the future, for increased susceptibility to risks in the environment, and even for characteristics such as personality, intelligence, skills and shortcomings. Although these tests will offer remarkable insights to individuals, they raise difficult practical and ethical questions, and present both benefits and burdens for the family members of those tested.
Testing many by testing one
Genetic tests are different than other sorts of diagnostic information, since individuals' decisions have impact far beyond their own lives and health.
Genetic testing can identify alterations in our genetic makeup that we inherited from our parents, which means that there are similar genetic inheritances for all blood relatives of the original affected individual. As the generations multiply, more people are affected.
For example, a woman with a gene for breast cancer can pass the same specific genetic makeup to her female children, who can then pass it to their own children, and so on. And if the first woman has genetic testing and finds out her breast cancer has a genetic basis, the test results are meaningful not only for her, but also for her children and their children. They may learn something about themselves without ever undergoing testing.
So how widely should genetic testing results be shared, who should be informed of results, and under what conditions?
Whose information, and who decides?
Traditionally, medical information is considered confidential information that individuals may share or keep secret as they see fit. But genetic information challenges that premise, since it may have just as much meaning for the patient's family members as for the patient. Should a patient be allowed to refuse to share genetic testing results, even if it may place other family members at risk? What if family members want to know the results of genetic testing, but the patient refuses to share them? Who decides about access to such information after a patient is no longer alive?
All these questions highlight the need for discussion about the issue of sharing genetic information before any testing takes place. In particular, families should be encouraged to discuss what the information means and who should be informed about it.
In terms of policy and practice, a balance must be struck between respect for individuals' right to privacy, and the so-called "duty to warn" when a failure to disclose information places identifiable others at risk of serious harm. A patient's decision to keep a genetic test result about a cancer risk secret from family members may well challenge this duty, and justify the violation of privacy.
These concerns are part of an environment in which it is unclear whether individuals will be protected from discrimination based on genetic information -- which means that the value of the information must be weighed against its potential misuse.
The bottom line is that our medical practice, policy approaches, and legal standards are all woefully inadequate for dealing with the challenges genetic testing will bring not only for individuals, but for families as well. Why do we need to address these issues? Because genes, like family, are for keeps.
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.
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