Diagnosed with breast cancer.

 

 

A woman has just been diagnosed with breast cancer. Her doctor tells her that while cancer is a multifactorial disease, she carries the breast cancer susceptibility gene, BRCA1. One of her two identical twin 19-year-old daughters is afraid that she also may have inherited the gene (Chapter 4, Learning Objective 2, 3, 8).

What considerations would you give her daughter who is worried about inheriting the cancer gene?
What ethical issues are raised when one identical twin wants to know her genetic susceptibility to a disease and other does not?

Sample Solution

This is a complex situation fraught with both medical and ethical concerns. Here’s a breakdown of considerations and ethical issues:

Considerations for the Daughter:

  • Genetic Testing:

    • Pros: Knowing her BRCA1 status can empower her to make informed decisions about her health, including:

      • Increased Screening: More frequent mammograms, MRIs, or other screenings can detect cancer earlier, when treatment is more effective.

      • Prophylactic Measures: Preventive measures like prophylactic mastectomies or oophorectomies can significantly reduce cancer risk.

      • Lifestyle Modifications: Dietary and exercise changes may offer some protection against certain cancers.

      • Family Planning: Understanding her risk can inform decisions about having children and potential genetic testing for future offspring.

    • Cons: Genetic testing can be emotionally challenging:

      • Anxiety and Stress: A positive result can lead to significant emotional distress, even if the risk is not immediate.

      • False Positives/Negatives: There are potential for inaccurate results.

      • Privacy Concerns: Results can impact insurance and employment, potentially leading to discrimination.

  • Genetic Counseling: Strongly recommend professional genetic counseling before testing. A counselor can:

    • Provide in-depth information about BRCA1 and its implications.

    • Discuss the emotional, psychological, and social aspects of genetic testing.

    • Help her understand her specific risk based on family history and other factors.

    • Guide her in decision-making about whether or not to get tested.

Ethical Issues with Identical Twins:

  • Autonomy vs. Solidarity: Each twin has the right to make independent decisions about their health, including whether or not to get tested. This principle of autonomy must be respected. However, the twins’ shared genetic makeup and close relationship raise questions about the impact of one twin’s decision on the other.

  • Potential for Conflict: If one twin decides to be tested and the other chooses not to, it could create tension and strain their relationship.

  • Disclosure and Shared Information: If one twin tests positive for BRCA1, should she share this information with her sister, even if the sister doesn’t want to know? This raises issues of privacy, informed consent, and the potential for unintended consequences.

  • Impact on Family Dynamics: The knowledge of the gene mutation can impact the entire family, potentially leading to feelings of guilt, blame, or fear.

Recommendations:

  • Open and Honest Communication: Encourage the twins to have an open and honest conversation about their feelings and concerns.

  • Seek Professional Support: Recommend that both sisters seek independent genetic counseling to receive personalized information and guidance.

  • Respect Individual Choices: Ultimately, each twin has the right to decide whether or not to get tested, but it’s important for them to consider the potential impact of their decisions on each other.

Important Note: This situation highlights the complexities of genetic information and its implications for individuals and families. The focus should always be on providing accurate information, empowering individuals to make informed choices, and supporting them throughout the process.

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