Question

Your patient has just recently been diagnosed with familial adenomatous polyposis (FAP). This disorder is chronic, progressive, and fatal. There is a genetic test that can tell whether children of parents with the discase will develop it. The test is very accurate. The patient has become divorced and refuses to give you his consent to inform his ex-wife who now has custody of their three children. He threatens to sue you if you reveal elements of his medical care to his ex-wife. What should you do? a. Respect the patient's right to confidentiality. b. Transfer the patient's care to another physician as long as the patient agrees. c. Ask the health department to inform the patient's ex-wife about the disease risk. d. Seek a court order to inform the patient's ex-wife. e. Inform the patient's ex-wife of the risk to the children. f. Inform the ex-wife's doctor.

   Your patient has just recently been diagnosed with familial adenomatous polyposis (FAP). This disorder is chronic, progressive, and fatal. There is a genetic test that can tell whether children of parents with the discase will develop it. The test is very accurate. The patient has become divorced and refuses to give you his consent to inform his ex-wife who now has custody of their three children. He threatens to sue you if you reveal elements of his medical care to his ex-wife.
What should you do?
a. Respect the patient's right to confidentiality.
b. Transfer the patient's care to another physician as long as the patient agrees.
c. Ask the health department to inform the patient's ex-wife about the disease risk.
d. Seek a court order to inform the patient's ex-wife.
e. Inform the patient's ex-wife of the risk to the children.
f. Inform the ex-wife's doctor.
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Medical Ethics for the Boards
Medical Ethics for the Boards
Conrad Fischer 3rd Edition
Chapter 1, Problem 7 ↓

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Recognize that FAP is a hereditary condition that poses a significant risk to the offspring of affected individuals.  Show more…

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Your patient has just recently been diagnosed with familial adenomatous polyposis (FAP). This disorder is chronic, progressive, and fatal. There is a genetic test that can tell whether children of parents with the discase will develop it. The test is very accurate. The patient has become divorced and refuses to give you his consent to inform his ex-wife who now has custody of their three children. He threatens to sue you if you reveal elements of his medical care to his ex-wife. What should you do? a. Respect the patient's right to confidentiality. b. Transfer the patient's care to another physician as long as the patient agrees. c. Ask the health department to inform the patient's ex-wife about the disease risk. d. Seek a court order to inform the patient's ex-wife. e. Inform the patient's ex-wife of the risk to the children. f. Inform the ex-wife's doctor.
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Key Concepts

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Patient Confidentiality and Privacy
Patient confidentiality is a fundamental ethical and legal principle in healthcare, meaning that information shared by a patient is kept private and not disclosed without their consent. This trust forms the cornerstone of the patient-provider relationship, and breaches can lead to significant ethical, legal, and therapeutic consequences unless explicit exceptions, such as imminent harm to others, apply.
Genetic Testing and Counseling
Genetic testing plays a critical role in identifying heritable conditions and has far-reaching implications for the patient’s family. This concept involves understanding the genetic risks passed on to offspring and providing appropriate counseling about those risks. It also requires balancing the privacy of the individual against the potential benefits of disclosing genetic risks to family members, especially when minors may be at risk.
Ethical Decision-Making in Confidentiality Exceptions
In scenarios where familial or public health interests may conflict with individual rights, healthcare providers must carefully consider if exceptions to confidentiality apply. Generally, patient consent is required to release personal health information unless there is an imminent risk of serious harm to identifiable individuals. This principle guides decisions on whether and how to disclose sensitive information, ensuring that ethical and legal standards are upheld.

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Abby is a 33-year-old, married Roman Catholic woman who has received successful treatment for melanoma. While at the cancer center, she gave her consent to use her tissue samples in a research protocol in which researchers scrutinized chromosomes most frequently involved in rearrangements of melanoma cells. While visually inspecting Abby’s tissue sample, a researcher discovered a translocation or mutation between two other chromosomes. The mutated chromosomes were not among those the researcher had specific authorization to examine, in accordance with the informed consent form Abby had signed. According to the researcher’s description of the situation, the aberration is not directly responsible for the initiation of melanoma. Whether the aberration is a factor in promoting tumor growth or tumor metastasis remains a question. However, with such a genetic abnormality, Abby, if she became pregnant, has a 50% chance of spontaneous miscarriage, a 25% chance of delivering a severely deformed child, and a 25% chance of a healthy child. Moreover, her viable offspring risk carrying the same abnormality. Unsure whether to tell Abby about these findings, the researcher contacts Abby’s primary oncologist (who has a longstanding relationship with her) as well as the Ethics Consultation Service. 1. The most compelling of the reasons listed below not to tell Abby about the finding is: a) Abby’s primary oncologist believes she will be very upset by the information. b) Disclosing genetic information to one person inherently discloses information about that person’s family members without their consent. c) Abby’s right of autonomy includes the right not to have unwanted information forced upon her. d) Abby’s religious beliefs forbid abortion, so having the information will not enable her to prevent the potential harm of miscarriage or birth defects. 2. The ethical guideline that most comprehensively supports informing Abby about the incidental finding is: a) The right of an individual to self-determination or autonomy in healthcare generates an obligation among health professionals to communicate information to that individual that may be relevant to making medical decisions. b) Researchers are obligated to disclose information learned about the subjects who agree to participate in their research. c) Researchers have a duty to try to prevent probable harms to research subjects, including in this case the harm of miscarriage or serious birth defects. d) The principle of justice holds that it would be unfair not to enable the research subject to decide for herself how to handle the genetic information. 3. The best way for a researcher to avoid this dilemma in the future is: a) Examine only those parts of a research subject’s tissue sample for which specific authorization and consent have been obtained. b) Amend the informed consent process and form for the protocol to include a statement that subjects will be notified if researchers discover information that may be medically useful unless subjects indicate they do not want to be informed. c) Inform all subjects that no observations from the research will be disclosed to them except the published, aggregate results. d) Implement an institution-wide policy that requires researchers to inform subjects about any medically useful information discovered in research. 4. An ethically supportable recommendation in this case is: a) Abby should not be told because the researcher has no right to the knowledge of the existence of the mutation. b) The researcher should inform Abby that he unexpectedly learned something about her genes that may have implications for childbearing and allow her to decide if she wants more information. c) The researcher and Abby’s primary physician should meet with Abby and her husband and relay the information in a very sensitive way. d) Abby should not be told because she may decide she should not try to conceive because of this information, and she still has a 25% chance of bearing a healthy child.

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