Overview
Individual Based Case/Discussion forum #1The DNA Age: do insurance companies have a right to our DNA?
Breast cancer affects 1 in 8 American women during their lifetime. Women with mutations in genes called BRCA1 or BRCA2 have up to an 85% chance of developing breast cancer by age 80. Pharmaceutical companies recently have received permission to begin offering BRCA testing kits to physicians.
Debra, a mother of three daughters, decided to have the genetic test conducted at her doctor's office. There has been a history of breast cancer in Debra's family, and she was concerned that she might also carry the form of the gene associated with breast cancer. Since the test costs about $1,000, Debra decided to inform her health insurance provider and to ask them to pay the costs.
Debra went ahead and had the test done, and the results came back positive.
A problem arises when the insurance company requests the test results. Their reasoning for the inquiry is that knowing the results will help them better plan for the future of the policyholder.
Roles
Group 1: Debra and her family
Group 2: Debra’s employer
Group 3: Insurance company
Group 4: Physicians
Group 5: General public
Group 6: Geneticists
Group 7: Economists
Group 8: Government Agency
Discussion Questions
- Do you feel that the insurance company has the right to know the results of genetic testing? Why or Why not?
- Is the insurance company's explanation, "knowing the results will help us plan for the future," a valid one? Why or Why not?
- Do you think that Debra should also have her daughters tested for the defective gene? Give reasons that will support your answer.
Guidelines
This is an individual-based discussion. Each student post individual postings. When you post your response to each discussion question in the class discussion board, be sure to state your group number and role first: e.g. Group 1 – Debra.
An active participant means that the student posts responses and discusses others’ responses for each discussion question. Evaluation of participation is based on the quality and timing of responses, not just quality. The discussion should focus on the application and interpretation of the concepts and theories provided in the course content. Always keep in mind your group’s objective and how to make a decision to achieve your goal.
Discussion Rubric
im group 6
And reply too two these two discussion post
Reply to lulu Group 6: Geneticists
1. Do you feel that the insurance company has the right to know the results of genetic testing? Why or why not?
As a geneticist, I do not believe that the insurance company should have an unrestricted right to Debra’s genetic test results simply because it paid for the testing. A positive BRCA1 or BRCA2 result is important medical information, but it is not the same as a cancer diagnosis. It tells us that a person has an increased genetic susceptibility to certain cancers, but it cannot predict with certainty whether that individual will develop cancer or when it might occur. This distinction is important because genetic risk should not automatically be treated as future disease. The National Cancer Institute similarly explains that some people who inherit harmful BRCA variants never develop cancer.
I also think genetic information deserves a particularly high level of privacy because Debra’s results indirectly reveal information about her biological relatives. Her daughters did not choose to be tested, yet Debra’s positive result tells them something about their own potential genetic risk. This makes genetic data different from many other pieces of medical information and raises concerns involving confidentiality, informed consent, and familial privacy. These were also major ethical concerns identified in our earlier analysis.
There may be situations where a health insurer needs limited information to determine medical necessity or payment for genetic testing. However, I would distinguish that from allowing the insurer to use the actual genetic result to classify Debra as a greater future financial risk. Under GINA, health insurers generally cannot collect or use genetic information for underwriting purposes, including decisions involving eligibility or premiums.
2. Is the insurance company's explanation, “knowing the results will help us plan for the future,” a valid one? Why or why not?
I understand the insurance company’s reasoning from a business perspective. Knowing that a patient has an elevated risk for breast or ovarian cancer could theoretically help an insurer anticipate future screenings, preventive care, or treatment costs. However, I do not think “planning for the future” is enough justification for accessing or using Debra’s genetic results.
From a genetic perspective, risk is not destiny. Using a positive BRCA result as though Debra is guaranteed to become ill could lead to unfair assumptions about her future healthcare costs. It could also create a larger problem: people may become afraid to pursue genetic testing if they believe the information could later be used against them. That would work against the purpose of genetic medicine, which is to identify risk early enough to improve prevention and health outcomes. Our previous research also found that fear of genetic discrimination can discourage useful testing and potentially reduce opportunities for surveillance and prevention.
I would consider the insurer’s explanation more reasonable if “planning” meant making preventive screenings and medically appropriate services more accessible to Debra. I would not consider it appropriate if planning meant changing how she is treated financially because of a disease she may never develop.
3. Do you think that Debra should also have her daughters tested for the defective gene? Give reasons that will support your answer.
I think Debra should inform her daughters about the mutation and encourage genetic counseling, but I would not automatically recommend immediate testing without considering their ages.
If her daughters are adults, I would recommend that they meet with a genetic counselor and seriously consider testing for the specific BRCA mutation identified in their mother. Having a close relative with a known harmful BRCA mutation is an important reason to consider testing. Knowing their status could allow them and their physicians to make informed decisions about future screening and risk-reduction strategies. Genetic counseling is especially important because it helps patients understand not only the medical implications of a positive or negative result but also the psychological and family consequences of receiving that information.
If Debra’s daughters are under 18, however, I would generally recommend waiting. The National Cancer Institute notes that professional groups do not recommend BRCA1/2 testing for children under 18 because BRCA-associated cancers are extremely unlikely during childhood and there are no BRCA-specific risk-reduction strategies intended for children. Waiting also gives the daughters the opportunity to participate in the decision themselves when they are old enough to understand what knowing their genetic status could mean.
Overall, I believe genetic testing is most beneficial when the information is used to empower patients rather than classify them. Debra’s result can help her make informed healthcare decisions and potentially help her daughters understand their own risks, but those benefits should not come at the expense of privacy, informed consent, or protection from genetic discrimination.
References
National Cancer Institute. (2024). BRCA gene changes: Cancer risk and genetic testing fact sheet.
U.S. Department of Labor. (n.d.). Your genetic information and your health plan: Know the protections against discrimination.
Reply to T
group 1 - Debra and Her Family
- 1. Do you feel that the insurance company has the right to know the results of genetic testing? Why or why not?
I do not think the insurance company should automatically have the right to know the results of Debra's genetic testing. It’s very apparent why the insurance company would want this information; because it could help them estimate Debra's future health risks and potential medical costs. However, in my opinion, there is a difference between knowing that someone currently has a medical condition and knowing that they have a genetic mutation that increases their risk of developing a condition.
In Debra's case, testing positive for the BRCA mutation does not mean that she currently has breast cancer or that she will develop it. If the insurance company can use this information against her, I think it could discourage people from getting genetic testing in the first place. According to McGleenan (2023), concerns regarding the insurance ramifications of genetic testing often leads consumers to decline testing or avoid participating in genomic studies altogether. This is where information asymmetry becomes significant. Debra has information about her health risk that the insurance company does not have, but I don't think that automatically means she should be required to give up her privacy.
I also think there is a connection to adverse selection. I understand that insurance companies need information to accurately estimate risk, but if people are afraid that genetic testing will negatively affect their insurance, they may avoid getting tested. In that situation, the attempt to reduce one insurance problem could potentially create another problem.
- Is the insurance company’s explanation, “knowing the results will help us plan for the future,” a valid one? Why or why not?
Insurance companies must plan for future costs and risks, so from an economic standpoint, I understand why having more information about their policyholders could help them do that. A significant number of corporations effectively incorporate traditional strategies for managing financial risk into their day-to-day activities (Yaqub, 2023). However, I don't think it is enough of a reason for them to have access to Debra's genetic information. Again, predisposition to higher risk doesn’t automatically correlate to diagnosis.
We must consider whether something useful to the insurance company automatically makes it fair to the individual. In this case, Debra took the initiative to learn more about her own health because she had a family history of breast cancer. I don't think she should be financially punished simply because she chose to get information that could help her make better decisions about her health.
This is where the difference between efficiency and equity comes into play. Having more information may make the insurance company more efficient when estimating risk, but it could create an unfair situation for people who happen to have a genetic mutation. There has to be some balance between allowing insurers to manage risk and protecting individuals from being treated differently based on genetic information.
- Do you think that Debra should also have her daughters tested for the defective gene?
I think Debra should consider having her daughters tested, especially because there is a history of breast cancer in the family and Debra tested positive for the BRCA mutation. However, I think the decision should be made carefully with their doctors and, if they are of age, with the daughters themselves.
There is meaningful value in knowing this information because it could allow Debra's daughters to make more informed decisions about their health in the future. The value of the test is not necessarily just the test result itself. The information could potentially help them decide what type of monitoring or preventive care they may need. From a health economics perspective, this is an example of the value of information. Having better information can help people make better decisions.
Simultaneously, I don't think genetic testing should be treated as an easy decision. Finding out that you have a genetic mutation could cause anxiety, and there are also concerns about privacy and how the information could potentially be used. Additionally, having the mutation does not mean that someone is guaranteed to develop breast cancer. I think the daughters should understand both the benefits and possible consequences before deciding.
Overall, I would lean toward testing because I think knowing their genetic risk could give Debra's daughters more control over their future health decisions.
References:
McGleenan, T. (2023). Genetic testing and the insurance industry. In Genetics and insurance (pp. 57-73). Garland Science.
Yaqub, S. (2023). Navigating Uncertainty: Assessing the Impact of Financial Risk Management on Organizational Performance: Evidence From Insurance Companies in Pakistan. Journal of policy research.