Should providers warn others of genetic results?
Should providers warn others of genetic results?
Only do so with patient's consent
If a genetic test reveals a patient is at high risk for cancer, the ordering physician may think it's important for this information to be shared with others in the family, but the patient may think otherwise.
"Often, this poses ethical dilemmas. To some extent, the law has something to say about it," says Reed E. Pyeritz, MD, PhD, director of the Center for the Integration of Genetic Healthcare Technologies and professor of medicine and genetics at the University of Pennsylvania. "If the patient says, 'Don't share this with anybody,' the physician is obligated not to share it. That is true not just with genetic testing, but any medical information."
Because the results of genetic testing could well pertain directly to relatives, the physician may see genetic information as "special" and feel an obligation to warn relatives of a potential risk, says Pyeritz, while others view genetic test results as highly personal, and the most privileged type of information in terms of patient privacy requirements.
"Undoubtedly, as all sorts of health care providers become more familiar with genetic testing, they will also become more comfortable with the ethical issues involved," says Pyeritz.
An example of a test with a direct bearing on the health of relatives is any gene that conveys a high risk for cancer, such as BRCA1 and BRCA2, says Pyeritz. "Here, the risk of breast or ovarian cancer for a woman with a mutation is 50% to 80% in her lifetime, and if this risk were known, effective steps could be taken to reduce the risk greatly," he says.
Even if the test has a direct bearing on the health of a relative, the patient has the right to maintain confidentiality, he stresses. "Physicians would be in violation of the law if they did pass on that information," says Pyeritz. "There are very strict boundaries. The physician might feel badly about that, but nonetheless, their hands are tied."
Patient must decide to share
If the patient agrees his or her family members should be aware of the test results, the physician can help by preparing something for the patient to hand out to relatives, Pyeritz explains.
This is more easily done if a family physician is caring for multiple relatives, but this isn't typically the case, he notes. "It really is incumbent on the patient to let the relative know there is something they may want to know about," Pyeritz says.
The patient can say, for example, "I've been told I'm at risk, and you should talk to your physician about it," or copy educational material he or she was given and pass these on to a relative.
"The physician doesn't have any obligation beyond that," Pyeritz says. "The ethical principles that pertain are the standard ones that apply to all medical practice. Autonomy, privacy, and confidentiality are all relevant to this situation."
There are cases where a compelling argument can be made for reporting genetic findings to relatives, such as a finding with life-threatening or serious health implications such as polycystic kidney disease, according to Jeffrey Kahn, PhD, MPH, professor of bioethics and public policy at Johns Hopkins University in Baltimore, MD.
"Usually, the physician will encourage the patient to disclose the information to relatives," he says. "It would be very difficult to justify disclosure to a relative against the patient's wishes. We would need to find a parallel to required contact tracing for infectious disease, and I don't think there is an example in genetics."
Employers have no right
Kahn stresses that employers should "definitely not" have access to genetic testing results, except in situations where genetic information may protect employees in the workplace. For instance, an individual may have some increased risk from workplace exposure to toxic substances that can be predicted based on genetic information.
"But even then, the information should only be available to employers with consent of the individual," says Kahn.
Even with single gene Mendelian disorders, let alone whole genome sequencing, it is standard practice not to share genetic testing results with family members unless the original patient gives his or her consent, says Charis Eng, MD, PhD, FACP, chair and director of the Cleveland Clinic's Genomic Medicine Institute in Cleveland, OH.
"It is certainly anathema to even think that employers can have access to whole genome sequencing data," says Eng.
Sources
- Charis Eng, MD, PhD, FACP, Chair and Director, Cleveland (OH) Clinic Genomic Medicine Institute. Phone: (216) 444-3440. Email: [email protected].
- Jeffrey Kahn, PhD, MPH, Levi Professor of Bioethics and Public Policy, Johns Hopkins Berman Institute of Bioethics, Baltimore, MD. Phone: (410) 614-5679. Email: [email protected].
- Reed E. Pyeritz, MD, PhD, Director, Center for the Integration of Genetic Healthcare Technologies/Professor of Medicine & Genetics, University of Pennsylvania, Philadelphia. Phone: (215) 662-4740. Email: [email protected].
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