Bioethical Issues in Cancer Genetic Testing
        Beneficence
        Nonmaleficence
        Autonomy
        Justice
Privacy and Confidentiality: Disclosure of Patient’s Genetic Information
        Disclosure in research
        “Duty to warn”: legal proceedings, federal/state legislation, and recommendations of professional organizations
Employment and Insurance Discrimination
        Legal proceedings, federal/state legislation, and recommendations of professional organizations
        Professional guidelines and other resources

Having an understanding of the ethical, legal, and social implications (ELSI) regarding cancer genetic testing may influence the clinician’s response to the complex questions and issues that may arise during the process of risk assessment and counseling. This section discusses biomedical ethics codes, legal and social issues relevant to privacy, and fair use in the interpretation of genetic information. In order to integrate the different perspectives of bioethics, law, and psychosocial influences, case scenarios are offered to illustrate dilemmas encountered in the clinical setting. (Refer to the Determining the Test to Be Used section of this summary for more information about the regulation of genetic tests.)

Bioethical tenets can guide health care providers in dealing with the complex issues surrounding predictive testing for hereditary cancer. The tenets of beneficence, nonmaleficence, autonomy, and justice are part of a framework needed to balance the complex and potentially conflicting factors surrounding a clinician’s role in respecting privacy, confidentiality and fair use of genetic information obtained from cancer genetic testing.

The concept of beneficence dictates that the primary goal of medical care is to provide benefit through appropriate health care.[1] In the field of oncology, this translates into using early detection and effective treatment protocols to improve outcomes. Providing beneficent care may go beyond medical outcomes of treatment to encompass the patient’s life circumstances, expectations, and values.[1] Consideration of the patient’s psychological and emotional ability to handle the testing and results disclosure process can help avoid doing harm.[2] (Refer to the Psychological Impact of Genetic Testing/Test Results on the Individual section of this summary for more information.)

Nonmaleficence is the bioethical code that directs health care providers to do no harm, inclusive of physical and emotional harm, and acknowledges that medical care involves risks as well as benefits.[1] Particular to the field of oncology, adherence to this construct includes taking measures to minimize the adverse effects of cancer prevention, treatment, and control. This may encompass taking precautionary measures to prevent inadvertent disclosure of sensitive information.[2]

Autonomous decision-making respects patient preferences by incorporating informed consent and education.[1] In the field of oncology, the patient has the right to choose or decline services by comparing different medical approaches’ risks and benefits of predictive testing services that may have similar medical outcomes or to decline those services. Additionally, it is beneficial to consider the sociocultural and family dynamics to ensure medical decision-making takes places without coercion or interference.[1]

Justice refers to the equitable distribution of the benefits and risks of health care.[1] A goal in oncology is ensuring access to cancer genetic services. The availability of predictive genetic testing should not be dependent on ethnic background, geographical location, or ability to pay. Genetic discrimination should not be a result of predictive testing.[2] Equitable distribution balances individual rights with responsibilities of community membership.[1]

A strong provider-patient relationship is founded on respect for the patient’s privacy and confidentiality; therefore, protecting the patient’s personal information from third parties is key to building trust.[2,3] Predictive testing for cancer susceptibility presents a challenge because of the hereditary nature of the diseases being tested and the implications of genetic risk for family members. Physicians are faced with a duty to warn or to act to prevent foreseeable harm.[4] One practical suggestion for facilitating family-based communication is providing patients with education and information materials to facilitate disease susceptibility discussions with family members.[1] The next section discusses the legal, legislative, and ethical basis for balancing patient confidentiality with duty to warn.

Privacy and confidentiality also applies to research, for example, population screening for genetic diseases. The U.S. Department of Health and Human Services authorizes the use of Certificates of Confidentiality to researchers.[5] This certificate issued by the National Institutes of Health protects the researcher from having to reveal the identity of any research subject “in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings.” The protections offered by the certificate of confidentiality are limited to personally identifiable information collected beginning on the date of issuance and ending on the expiration date, which matches the date of study completion. The NIH Office of Extramural Research policy and guidance on Certificates of Confidentiality notes that any personally identifiable information collected during that time interval is protected in perpetuity. In regard to family-based recruitment strategies, the Cancer Genetics Network Bioethics Committee assembled a group of experts to develop recommendations for researchers to use in approaching family members.[6] Due to the wide spectrum of research strategies, there are different levels of concern. Essential to family-based recruitment strategies is informing potential research participants how their personal information was obtained by the researcher, why the researcher is approaching them, what the researcher knows about them, and for what purpose the information will be used, whether or not they decide to participate.[6]

“Duty to warn” requires balancing the bioethical constructs of beneficence and autonomy with other factors such as case proceedings, legislation and professional societies’ recommendations. As of September 2008, the National Council of State Legislatures lists 27 states that have legislation requiring consent to disclose genetic information. Genetic information can vary depending on the legal case and the language used in state and federal legislation, but may include direct and indirect genetic testing and family history information; it does not apply to current conditions. Genetic diagnosis can be done through direct genetic tests (direct mutation analysis) for disorders linked to a specific mutation and indirect genetic tests (indirect mutation analysis) for disorders in which the specific mutations are not known or there are multiple different mutations.[7] There are four state case laws that apply to duty to warn.[8] Two cases deal directly with testing for cancer genetics, one case deals with a psychotherapist's duty to warn a relative of imminent threat, and another with genetic testing as a tool for reproductive decisions. Table 1 summarizes the cases.

At the federal level there are strict nondisclosure policies governing private health information.[8] The Standards for Privacy of Individually Identifiable Health Information (Privacy Rule), which summarizes the Health Insurance Portability and Accountability Act (HIPAA) of 1996, finds it permissible to disclose health information without consent when the public interest is at risk;[15,16] therefore, under certain conditions, there are exceptions to the nondisclosure policy include the following:

1. There is serious or imminent threat to the health or safety of a person or the public.
2. The threat constitutes an imminent, serious threat to an identifiable third party.
3. The physician has the capacity to avert significant harm.

Professional societies and government advisory agencies have published their different positions and recommendations on communication between a physician and a patient's relatives in regard to disclosure of genetic disease.[4,8,17]

The Council on Ethical and Judicial Affairs of the American Medical Association (AMA) and the American Society of Clinical Oncology (ASCO) [18] encourage discussing the importance of patients sharing genetic information with family members.[4] Specifically the Council on Ethical and Judicial Affairs of the American Medical Association states “Physicians …should identify circumstances under which they would expect patients to notify biological relatives of the availability of information related to risk of disease…(and) physicians should make themselves available to assist patients in communicating with relatives to discuss opportunities for counseling and testing, as appropriate.” ASCO’s position is that providers “should remind patients of the importance of communicating test results to family members… ASCO believes that the cancer care provider’s obligations (if any) to at-risk relatives are best fulfilled by communication of familial risk to the person undergoing testing, emphasizing the importance of sharing this information with family members so that they may also benefit.”[18] These organizations recommend that family members disclose genetic information.

The National Society of Genetic Counselors,[19] the Great Lakes Regional Genetic Group, and the International Society of Nurses in Genetics [20] support disclosure to relatives with the patient's consent.[4] One of the tenets of genetic counseling is to maintain information received from clients as confidential, unless released by the client or consent for disclosure is provided as required by law.[4,19]

Similar to the Privacy Rule, the U.S. Bioethics Commission,[21] American Society of Human Genetics,[22] and National Human Genome Research Institute (NHGRI) recommend the following guidelines to identify exceptional circumstances under which it is ethically acceptable to breach confidentiality.[4,8]

1. There is a high likelihood of harm if the relative is not warned.[4,21,22]
2. The patient, despite encouragement, refuses to inform family members.[4,21,22]
3. The relative is identifiable.[22]
4. The harm of nondisclosure is greater than the harm of disclosure.[22]
5. Current medical technology renders the disease preventable, treatable or manageable.[22]
6. Only the information necessary to prevent harm is released.[4,23]
7. There is no other reasonable way to avert harm.[4]

At an international level the World Health Organization and World Medical Association have similar guidelines.[4] Additionally, Australia, Canada, Germany, Japan, the Netherlands, and the United Kingdom have guidelines supporting the disclosure of genetic information to relatives under similar exceptional circumstances.[4]

Genetic information obtained from genetic susceptibility tests may have medical, economic, and psychosocial implications for the individual tested and his or her family members. Fear of employment and insurance discrimination are considerations for individuals considering genetic testing. A review of ethical controversies in cancer genetics clinics included a phone interview of over 300 members of genetics support groups;13% of the study participants reported being denied or dismissed from a job and 22% reported being refused life insurance because of a genetic disorder in the family.[10,12,24] (See the Informed Consent and Exploration of Potential Risks, Benefits, Burdens, and Limitations of Genetic Susceptibility Testing sections of this summary for more information on discrimination issues related to cancer genetics services.)

A legal case example at the federal district court level involves the Burlington Northern Santa Fe Railroad. The U.S. Equal Employment and Opportunities Commission requested that Burlington Northern Santa Fe Railroad not be allowed to use medical information obtained from genetic tests for employment decisions.[23]

In the last 15 years, state and federal legislation statues have been developed to prevent the use of genetic information for employment practices, such as hiring, promotion, and salary decisions; and insurance policies, including life and health coverage, by employers, schools, government agencies, and insurers.[12] According to Executive Order 13145, federal departments and agencies are prohibited from discriminating against employees on the basis of genetic testing results or information about a request for genetic testing services.[23] Employers and insurers are prohibited from intentionally lowering policy rates by using practices such as screening for individuals who are at risk of becoming ill or dying due to genetic disease susceptibility, such as cancer.[23] Federal laws, including the Genetic Information Nondiscrimination Act (GINA), do not cover employer-provided life and disability; however, some states do have legislation addressing the use of genetic information for life and disability policies. The National Conference of State Legislatures (NCSL) [25,26] summarized current health legislation of the U.S. Congress. Examples of relevant legislation regarding genetic information include, GINA, HIPAA, Americans with Disabilities Act (ADA), and Employee Retirement Income Security Act (ERISA).

GINA 2008 protects the provision of health insurance and employment against discrimination based on genetic information as follows:

• Prohibits access to individuals’ personal genetic information by insurance companies and by employers.[28]
• Prohibits insurance companies from requesting that applicants for group or individual health coverage plans be subjected to genetic testing or screening, and prohibits them from discriminating against health plan applicants based on individual genetic information.[28]
• Does not prohibit medical underwriting based on current health status.[29]
• Does not mandate coverage for medical tests or treatments.[29]
• Does not interfere or limit treating health care providers, including those employed or affiliated with health plans, from requesting or notifying individuals about genetic tests.[29]
• Prohibits employers from using genetic information to refuse employment, and prohibits them from collecting employees’ personal genetic information without their explicit consent.[28]
• Does not prohibit occupational testing for toxic monitoring programs, employer-sponsored wellness programs, administration of federal and state Family and Medical Leave Laws and certain cases of inadvertent acquisition of genetic information.[29]

GINA amends and/or extends coverage of HIPAA, ADA, and ERISA by including genetic information under medical privacy and confidentiality legislation and employment and insurance determinations.[25] Additionally, with the passage of GINA, researchers and clinicians can encourage participation in clinical trials and appropriate genetic testing knowing that there are federal protections against discrimination based on the results of genetic testing. GINA established the minimum protection level that must be met in all states. However, for states with more robust legislation in place, GINA does not weaken existing protections provided by state law.

However, GINA has several limitations.

1. GINA does not apply to members of the United States military, to veterans obtaining health care through the Veteran’s Administration, or to the Indian Health Service, because the laws amended by GINA do not apply to these groups and programs.
2. The legislation does not apply to life insurance, long-term care, or disability insurance. Even though GINA does not provide protection for employer-provided disability and life insurance, some states do encompass these arenas in addition to employment, genetic privacy, health insurance, health insurance enforcement, life, disability, and long term care.[23,30] NCSL has links to tables summarizing what each state determines genetic information to encompass and the relevant state regulations. Thirty-five states have legislation covering genetic discrimination in hiring, firing, and/or terms, conditions or privileges of employment. Seven states have varying legislation covering genetic discrimination in life, disability and/or long-term care insurance. Some states mention life, disability or long-term care as exclusions to their genetic nondiscrimination legislation.[30]

GINA and other state and federal protections do not extend to genetic testing of active duty military personnel or genetic information obtained from active duty military personnel.[31,32] In the military, genetic testing provides medical information that is to be used to protect military personnel from harmful duty or other exposures that could stimulate or aggravate a health problem. For example, use of certain antimalaria medication in individuals with glucose 6-phosphate dehydrogenase deficiency can result in red blood cell rupture. Therefore, some genetic information is critical for maintaining the health and safety of military personnel given the possible stressful occupational environments they face. In addition, all military personnel provide a DNA sample to be maintained in a repository that can be used for identification purposes.

Results of genetic tests for disease predisposition could influence military eligibility for new enlistments, and for current military personnel, genetic test results could influence worldwide eligibility, assignments, and promotions. For example, a young woman found to carry a BRCA mutation may not be considered eligible for deployment for 12-15 months because access to recommended health care may not be easily accessible, such as breast MRI, a recommended screening modality for BRCA mutation carriers. Active duty military personnel with less than eight years of active duty service are especially vulnerable in the event they become disabled and must go before the medical board to establish benefit eligibility. In 2006, Department of Defense Instruction Number 1332.38 (DODINST 1332.38) redefined pre-existing condition as a result of two cases brought by service members who each had a hereditary condition that presented later in their military career. The disability instructions state that any injury or disease discovered after a Service member enters active duty -- with the exception of congenital and hereditary conditions -- is presumed to have been incurred in the line of duty. Any hereditary and/or genetic disease shall be presumed to have been incurred prior to entry into active duty. However, DODINST 1332.38 further states that any aggravation of that disease, incurred in the line of duty, beyond that determined to be due to natural progression, shall be deemed service aggravated. As a result of these two cases, the 8-year active duty service limit was established. This means that after 8 or more years of military service the natural progression of a genetic condition would be deemed aggravated by military service. Therefore, the presence of a congenital or hereditary condition would not be considered a pre-existing condition in disability decision-making for those with 8 or more years of service.

There are multiple psychosocial, ethical, and legal issues to consider in cancer genetic testing. Genetic tests for germline mutations have social and family implications. In addition to prevention and surveillance options, genetic testing should be offered in conjunction with genetic education and counseling.[18] A comprehensive strategy for dealing with ethical dilemmas can incorporate a shared approach to decision-making including open discussion, planning, and involvement of the family.[5] To integrate the different perspectives of bioethics, law, and psychosocial influences, the following scenarios can help health care providers become familiar with commonly encountered dilemmas; it is imperative, however, that the clinician evaluate each patient and his or her situation on a case-by-case basis. These case scenarios were adopted from “Counseling about Cancer: Strategies for Genetic Counseling;” the in-depth case examples are extensively discussed in the original text.[2]

A patient with known family history of breast cancer is interested in testing for BRCA1 and BRCA2 mutation. In reviewing her family history, the health care provider realizes that the patient is not aware of an additional rare but hereditary cancer mutation in a second-degree relative, which the health center tested and confirmed in the past. After talking with her family, the patient is unable to confirm the details of the second cancer and again expresses interest in BRCA1/2 testing. Does the health care provider have a “duty to warn” the patient of the unknown cancer susceptibility gene in the family, at the risk of disclosing private patient information? The following issues are important to consider in resolving this case.

1. Preserving the confidentiality of the relative and informing the patient of her cancer risk are both important goals. In general, the health care professional has a “Duty to warn” when there is a high likelihood of harm if not warned, the person at risk is identifiable, the harm of nondisclosure is greater than disclosure, and only the information necessary to prevent harm is released. (Refer to the Privacy and Confidentiality: Disclosure of Patient’s Genetic Information section of this summary for more information.)
2. It is possible that the benefit outweighs the harm of informing the patient of the second cancer syndrome because the monitoring and management of the rare cancer are different from guidelines for the general population. Additionally both parties are identifiable. An option is to contact the relative for permission to disclose the genetic test result to the patient in question.
3. If it is not possible to obtain permission to disclose, it is possible to inform the patient that she meets clinical criteria for the hereditary cancer syndrome without releasing specific information about the genetic test results of the relative.

A patient with a family history of a hereditary cancer is interested in predictive genetic testing and convinces an affected family member, who initially expresses unwillingness, to be tested in order to establish the familial mutation. In this scenario, the surviving family member admits to feeling pressured into consenting for genetic testing. Both the patient and the affected family member are patients. What takes precedence — the patient’s right to know or the family member’s autonomy? The following issues are important to consider in resolving this case.

1. Explore, with the patient, alternatives to testing that do not involve the participation of the unwilling family member, such as testing stored tissue of a deceased relative. (Refer to the Value of Testing an Affected Family Member First section of this summary for more information).
2. If the patient does not want to consider other options and the family member has agreed to be tested without coercion or interference, inform the family member of the implications of the test results, including risks and benefits, and assess her emotional well-being prior to testing.[19] (Refer to the Informed Consent section of this summary for more information.)

A hereditary cancer syndrome has been identified in a family. Within that family, an adult child wants a cancer susceptibility test that her parent declined, and one identical twin wants testing but the other does not. Even though the noninterested parties have declined testing and do not want to know the results, it is possible that testing one relative can disclose results for the other family members. Do the rights of the family members interested in predictive testing take precedence over the rights of the relatives who do not want to know? The following issues are important to consider in resolving this case.

1. In hereditary cancer syndromes, an individual’s right to know takes precedence over an individual’s right not to know especially if there are early detection and prevention strategies to reduce the likelihood of morbidity and mortality.
2. Since the family has a documented deleterious mutation, standard of care recommendations include guidelines for screening and monitoring. In the event that testing is not done, it is important to take “reasonable steps” to guarantee immediate family members are warned of the hereditary cancer risk. (Refer to the Privacy and Confidentiality: Disclosure of Patient’s Genetic Information section of this summary for more information.)
3. Pretest and posttest discussions can include the possibility of medical, psychological, and social impact on family members and strategies on how to lessen any negative impact. The patient should honor the wishes of relatives who request not to know and attempt to keep the results secret.[19]

A psychological assessment of a patient interested in predictive testing for an autosomal dominant cancer reveals a history of depression and suicidal attempts. The health care provider is considering denying or deferring testing because of concerns for the patient’s emotional well-being even though the patient refuses a referral to a psychologist because he reports feeling emotionally stable. Is deferring or denying predictive genetic testing a beneficent gesture or an act of paternalism? The following issues are important to consider in resolving this case.

1. Despite the patient’s refusal to speak with a psychologist, the health care provider can discuss the details of the case with a mental health professional to determine suicidal risk. (Refer to the Psychological Impact of Genetic Information/Test Results on the Individual section of this summary for more information.)
2. If there is risk of psychosocial disturbances because of test results, it is possible to defer testing. Conditions under which testing can resume are explained to the patient. For example, the NSGC Code of Ethics recommends that clients be referred to other qualified professionals when the patient requires additional services.[19]
3. Denying a test does not seem justifiable under any circumstances because it implies that the client will never be able to undergo testing.

Refer to the PDQ summary on Cancer Genetics Overview Genetics Resource section for more information about the ELSI of genetic testing and counseling.

References

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