Genetic Risks – How Much Should You Know

When a physician or a nurse takes your medical history, he or she would like to know if there is a family history of any illness. You will have no clue how to answer this question if a physician, treating one of your family members, did not warn you about the illness and your risk of contracting the same illness.

An article in the Canadian Medical Association Journal (CMAJ) asks: What are the ethical and legal issues surrounding physicians’ duty to warn family members of genetic risk? This question has added importance in cases where a patient wants a physician to protect his or her privacy and not disclose the information to family members.

The article makes the point that common sense would dictate a physician to disclose such information without the patient’s consent if the physician thinks the risk is serious, imminent and preventable. But is this legally acceptable or is it just an ethical and moral obligation?

“The legal landscape around the duty to warn of genetic risk is unclear in Canada, but in some cases the benefits of disclosure may be so great as to outweigh the obligation to maintain confidentiality,” says the article.

The main reason to disclose genetic risk information is to avoid harm to other family members. The information will allow the family members to decide if they would like to undergo testing and take preventive measures. The information may help the family members make informed choices regarding marriage, career and having children who may be exposed to the same kinds of risks.

There may be some disadvantages to disclosing confidential genetic risk information without patient’s permission. The action would compromise physician-patient relationship and trust. It will violet patient’s autonomy and integrity and may cause mental and emotional distress to the patient and the family members.

In difficult situations, it would be best for the physician to explain to the patient the importance of sharing the information with the rest of the family. The article says, “Physicians fulfill their duty by informing patients of the importance of the information for family members and encouraging intrafamilial disclosure.” In my experience, in most situations, intrafamilial disclosure works the best. As a specialist, I have no information where all the family members reside. Contacting each one of them would be a huge undertaking.

Another option discussed in the article suggests that the physician should inform the patient that under certain circumstances they will disclose relevant genetic information to family members even if the patient refuses to do so.

Finally, in cases where withholding genetic risk information from other family members may cause imminent harm to the family then the physician has moral and ethical obligation to share the information with the rest of the family even if the patient refuses to do so. This may cause legal problems but preventing harm may be a good defense. It is comforting to know that a situation where there is a need for releasing confidential genetic information without the patient’s consent is pretty rare.

Do you know your family medical history and how it affects your and your children’s health?

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