Case 9.3: Genetic Testing and Disclosure

Case

Lucy Mait, a 45-year-old woman, found out she has the BRCA1 gene mutation, which meant she has a high risk of developing breast cancer. Lucy was having a very hard time processing this information and was referred to post-test genetic counseling to make sure she was fully informed of the implications of these results. Lucy has a 29 year old daughter, who is planning a wedding, and an 18 year old nice. Her doctor, Dr. Braesecke, has encouraged her to share the information with her daughter and nice so they can be tested as well but she is very reluctant to tell them. She claims that she needs more time to process the situation herself and that she does not want to ruin the mood of the upcoming positive events. All three of these women have been lifetime patients of Dr. Braesecke and he is put in a very tough position because he knows that early diagnosis and preventative measures can save lives.

Dilemma

Dr. Braesecke is faced with the dilemma between sharing the information with Lucy’s family, which breaks confidentiality, and respecting Lucy’s wishes by not saying anything.

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Analysis

Dr. Braesecke is aware that “confidentiality can sometimes be ethically broke if there is a direct, imminent, and avoidable threat to the life of a third party” (CITE 259), but he is not sure whether this case fits this description. I argue that Dr. Braesecke ought to act under the principal of beneficence and inform the daughter and nice of this information. One can argue that this decision will violate the trust that is in the physician-patient relationship, which is important for future ongoing care. Dr. Braesecke can act under the utilitarian principle of justice, which states we ought to “seek to produce the maximal balance of positive value over disvalue – or the least possible disvalue, if only undesirable results can be achieved” (Beauchamp and Childress 254). In this case the benefit of telling two patients they are at high risk of having this mutation can possibly lead to preventative actions being taken that can save their lives. The disvalue in this case is violating the wishes of Lucy, who is just one patient. In this simple reasoning, two patients will be benefitted and only one would be offended. One can also look at the risks of keeping this information confidential compared to the risks of telling. The benefit of saving lives outweighs the harm of violating one’s autonomous decision. It can also be argued that Lucy will tell her family in the future, it is only a matter of timing. In response to that, it is impossible for Dr. Braesecke to be certain that Lucy will tell her family. The fact that Lucy may want to tell her family in the future but is not entirely sure speaks to the validity of the autonomy in her choice. Lucy has just been told she is at risk high risk for cancer, which other women in her family have had. According to Beauchamp and Childress, illness can limit one’s understanding of the situation and therefore limit one’s autonomy. Lucy’s judgment may be clouded and she may not fully understand the consequences of not telling her family, which can be seen in how she states she needs more time to process the situation. As their doctor, Dr. Braesecke is obligated by the principle of beneficence to prevent evil or harm (Beauchamp and Childress 152). He is in a situation where he has the ability to prevent serious harm by catching breast cancer in its early stages. One can argue that if Dr. Braesecke told Lucy’s family this act would be an act of hard paternalism. This hard paternalism is justified because, as stated above, the prevention of harm outweighs the risks of the action taken (Beauchamp and Childress 222). In this case Lucy’s genetic information ought not to be seen as entirely confidential because it may have direct implications on the well-being of others.

Sources

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009. Print.

Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. “Case 9.3: Genetic Testing and Disclosure.” Well and Good: A Case Study Approach to Health Care Ethics. 4th ed. N.p.: n.p., n.d. 294-296. Print.

http://www.myriadtests.com/app/brac.htm

4 thoughts on “Case 9.3: Genetic Testing and Disclosure

  1. Hello Rebecca,
    I understand where you are coming from when you state that information such as finding out that you have a gene which is a great predictor for breast cancer should be shared with other family members, especially women, because it could save lives. However, I do not agree with you when you state that the doctor should override the wishes of the patient. From my understanding, the BRCA1 gene does not 100% predict if you will develop breast cancer or not, it is just a really good indicator. Lucy has every right to withhold this information until all positive festivities have commenced. When Lucy feels comfortable to tell her daughter and niece, she should go ahead and tell them and tell them to get checked for that specific gene. Lucy’s daughter and niece can then decide what they want to do with that information later.

  2. I agree with the idea that the doctor should tell her daughter and her niece but only after persuading Lucy and after the wedding. The benefit of saving lives outweighs the harm of violating one’s autonomous decision. I totally respect and support this view, but I believe there should be trust that shouldn’t be broken. A question just came to me: what if the broken trust leads to the family’s no longer trusting any doctors from this point and on? I think this would do more harm than good to the family in the long run. This can be plausible because the case presented that Dr. Braesecke knows every one of them personally, and the closer the relationship, the bigger the impact of broken of the trust will be.
    I guess we can consider the other side also. Danielle in the comment above mentioned that Lucy should go ahead and tell them about this news later when she is comfortable with it. However, I believe that Lucy’s daughter and niece have the right to know; Lucy is obligated to tell them about it. In a way, Lucy is violating their autonomies by being selfish, strictly speaking, keeping things for herself thinking they wouldn’t like to know about it just because she is still taking things in for herself. Like it is stated in the book, sooner it will be better if they actually had cancer. Therefore, I came to the conclusion that the doctor should persuade Lucy before he acts and tell sometime after the wedding hoping that it won’t be too late.

  3. In this case, the conflict between beneficence and respecting autonomy is very clear. However, here, the beneficence only applies to a limited range of people and not to a large group. For example, a post earlier in the semester addressed the pilot who crashed a plane. It had been determined that he had been diagnosed with a mental illness previously. The argument made by the author of this post as well as of that earlier one was that the doctor should go ahead and disclose the information to those to whom it is pertinent. However, for both, I believe that overriding patient autonomy is harmful to overall beneficence in the long run. Disclosing information to Lucy’s relatives would result in a ruining of trust. Lucy would surely be upset and it is possible she would become wary of health care personnel. Overall, doctors are expected to maintain confidentiality. They do not have the role of public health official or police officer. Here, the balance between autonomy and beneficence leans towards autonomy in order to maintain long term beneficence in the form of trust in the health care profession.

  4. Hey Rebecca,

    Thank you for your post. I agree with your argument that Dr. Braesecke should notify the daughter and the niece on the principles of nonmaleficence and the utilitarian principle of justice. However, I do not think that Dr. Braesecke should tell the two young women about Lucy’s results. Instead, he should tell the two women that they need to come into the office for routine genetic testing. He can spin the request for the testing as a new protocol for the office or something of that nature. Therefore, Dr. Braesecke can protect Lucy’s privacy and promote preventative health for the other two women.

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