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Table of Contents

Think

Assess

 Patient: Autonomy

 Practitioner: Beneficence & Nonmaleficence

 Public Policy: Justice

Conclude

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20. Genetic Information Nondiscrimination Act

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Prevention of disease must become the goal of every medical practitioner.
~ Henry E. Sigerist

Abstract

The requirement of genetic testing for insurance and employment in the 1970s violated the principles of autonomy, beneficence and nonmaleficence, and justice. The mandatory testing was a violation of patient autonomy and the professional principles of “do good” and “do no harm” for practitioners, and increased social healthcare disparities. Congress responded by enacting the 1972 National Sickle Cell Anemia Control Act and Title II of the 2008 Genetic Information Nondiscrimination Act (GINA) to prevent discrimination in health insurance and employment, making it illegal for insurance companies to use genetic information for adjusting premiums, denying coverage, or for companies with 15 or more employees to use genetic information for hiring, firing, job placement, or promotion decisions.

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Think

[20:1] In the 1970s, some states started requiring African Americans to undergo genetic testing for sickle cell anemia to deny health insurance and employment. Congress, in response, enacted the 1972 National Sickle Cell Anemia Control Act, which withheld federal funding from any state that required sickle cell testing. Congress then passed Title II of the 2008 Genetic Information Nondiscrimination Act called GINA, which focused on preventing discrimination in the contexts of health insurance and employment:

[20:2]

     1. illegal to require individuals to purchase genetic tests;

     2. illegal for insurance companies to use genetic information to:

          a) adjust premiums,

          b) deny coverage, or

          c) impose restrictions that relate to preexisting conditions; and

     3. illegal for companies with 15 employees or more from requiring or using genetic information, including medical history for hiring, firing, job placement, or promotion decisions.

Assess
Patient: 1) Autonomy

[20:3] Requiring genetic testing as a requirement for insurance and employment is a type of coercion (a credible threat) that violates the principle of autonomy (informed consent). In this context, the patient-practitioner relationship is not only nonexistent but is a hostile relationship. The practitioner does not disclose any information necessary for the patient to make informed consent, nor does the practitioner request any authorization by the patient. Mandatory genetic testing completely violates the patient-practitioner relationship and is a complete violation of patient autonomy. 

Practitioner: 2) Beneficence & 3) Nonmaleficence

[20:4] Requiring genetic testing as a requirement for insurance and employment violated the professional principles of beneficence (do good) and nonmaleficence (do no harm). The practitioner was not ordering the medical tests to maximize the patient’s best interests as determined by the patient’s reasonable goals, values, and priorities, violating beneficence (do good). Rather, the practitioner ordered the medical tests for the company’s best interests that employed the practitioner even if that meant harming the patient, violating nonmaleficence (do no harm). The practitioners who complied with these unethical practices were not acting according to the principles of beneficence (do good) and nonmaleficence (do no harm), did not maximize the patient’s best interests, and did not act according to the medical standards of care.

Public Policy: 4) Justice

[20:5] Requiring genetic testing as a requirement for insurance and employment violated the principle of justice (be fair) as genetic testing did nothing towards the goal of eliminating healthcare disparities but instead increased disparities.

Conclude

[20:6] It is never acceptable for workplace practitioners to require genetic tests or medical history for employment decisions.

[20:7] In summary, mandatory genetic testing for insurance and employment purposes is an unacceptable practice that undermines patient autonomy, practitioner ethics, and social justice. The implementation of the Genetic Information Nondiscrimination Act ensures that individuals are protected from discrimination based on their genetic information, upholding the principles of autonomy, beneficence, nonmaleficence, and justice in the medical field.

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20. Review Questions

1. In response to states mandating African Americans to undergo genetic testing for sickle cell anemia for the purpose of denying health insurance and employment, Congress, enacted the 1972 National Sickle Cell Anemia Control Act, which withheld federal funding from any state that required sickle cell testing.

2. Congress passed Title II of the 2008 Genetic Information Nondiscrimination Act called GINA, which focused on preventing discrimination in the contexts of health insurance and employment.

3. Requiring genetic testing as a requirement for insurance and employment is a type of coercion (a credible threat) that violates the principle of autonomy (informed consent).

4. Mandatory genetic testing violates the patient-practitioner relationship and a violation of patient autonomy.

5. Requiring genetic testing as a requirement for insurance and employment violated the professional principles of beneficence (do good) and nonmaleficence (do no harm).

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20. Clinical Vignettes

1. Mr. Ramsey King, a 28-year-old African American mechanical engineer presents to their practitioner for a routine health examination. The patient is asymptomatic and has no medical complaints. In the past, the individual has heard that some states required African Americans to undergo genetic testing for sickle cell anemia. Which of the following statements best describes the reason why some states started requiring African Americans to undergo genetic testing for sickle cell anemia in the 1970s?

2. Ms. Raquel Baker, a 42-year-old African American technical writer visits their practitioner for a routine health examination. The patient has recently undergone genetic testing and is concerned about potential discrimination in the context of health insurance and employment based on their genetic information. Which of the following statements best describes the legislation aimed at preventing discrimination in the contexts of health insurance and employment based on genetic information?

3. Mr. Augustus Carter, a 39-year-old unemployed carpenter has been informed that in order to secure insurance coverage and employment, they must undergo genetic testing. This requirement has raised ethical concerns for the patient as it involves coercion, which violates multiple principles of bioethics. Which of the following principles of bioethics are violated by the requirement of genetic testing as a condition for insurance and employment?

4. The 1970s requirement for African Americans to get genetic testing as a condition for insurance coverage and employment had what effect on healthcare disparities?

5. A workplace practitioner is considering requiring genetic testing or medical history as part of the employment decision process. This has raised ethical concerns as to the acceptability of such practices. Is it acceptable for workplace practitioners to require genetic tests or medical history for employment decisions?

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20. Reflective Vignettes

1. Mr. William Thompson, a 35-year-old software engineer, has received a job offer from a large multinational company with full benefits, including healthcare and retirement. However, to qualify for a special low-risk insurance premium, he must submit a complete medical history and a genetic screening test that clears him from a list of high-risk indicators and factors. The practitioner explains to Mr. Thompson that while the test can provide valuable information about his health risks, it also raises ethical and privacy concerns. The differential diagnosis includes genetic discrimination, breach of confidentiality, and potential harm to family members. The practitioner discusses the risks and benefits of the genetic test with Mr. Thompson and advises him to seek legal and genetic counseling before making a decision.

Think

Assess

  Patient: Autonomy

  Practitioner: Beneficence & Nonmaleficence

  Public Policy: Justice

Conclude

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20b

Ms. Emily Lee, a 40-year-old radiologist, was diagnosed with colon cancer and took medical leave for treatment and recovery. Before returning to work, her employer required an institutional medical check-up. During the check-up, the practitioner noticed that the employer was administering genetic tests on employees for determining genetic predisposition to cancers as a risk management strategy for workers' compensation claims. The differential diagnosis includes invasion of privacy, genetic discrimination, and breach of confidentiality. Ms. Lee expresses concern about the ethical implications of the genetic tests and the potential consequences for her employment. The practitioner discusses the legal and ethical considerations with Ms. Lee and recommends consulting with a lawyer specializing in healthcare and employment law.

Think

Assess

  Patient: Autonomy

  Practitioner: Beneficence & Nonmaleficence

  Public Policy: Justice

Conclude

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