Prohibiting Genetic Discrimination to Promote Science, Health, and Fairness.

Protections against genetic discrimination advance genetics research and the clinical use of genetics, as well as ensure the ethical use of genetic data. Ten years after the passage of the Genetic Information Nondiscrimination Act (GINA), the American Society of Human Genetics remains a staunch advocate for GINA's strong implementation and for other laws that enhance protections for the public.

Sexual Orientation and Gender Identity Data Collection at US Health Centers: Impact of City-Level Structural Stigma in 2018.

Objectives. To examine the relationship between city-level structural stigma pertaining to sexual orientation and gender identity (SOGI) and completeness of patient SOGI data collection at US federally qualified health centers (FQHCs). Methods. We used the Human Rights Campaign's Municipal Equality Index to quantify city-level structural stigma against sexual and gender minority people in 506 US cities across 49 states. We ascertained the completeness of SOGI data collection at FQHCs from the 2018 Uniform Data System, which describes FQHC patient demographics and service utilization. We included FQHCs in cities captured by the structural stigma index in multinomial generalized linear mixed models to examine the relationship between city-level structural stigma and SOGI data completeness. Results. FQHCs in cities with more protective sexual orientation nondiscrimination policies reported more complete patient sexual orientation data (adjusted odds ratio [AOR] = 1.6; 95% confidence interval [CI] = 1.2, 2.1). This association was also found for gender identity nondiscrimination policies and gender identity data collection (AOR = 1.7; 95% CI = 1.3, 2.2). Conclusions. Municipal sexual and gender minority nondiscrimination laws are associated with social and municipal environments that facilitate patient SOGI data collection.(Am J Public Health. 2021;111(11):2059-2063. https://doi.org/10.2105/AJPH.2021.306414).

Measures of Racism, Sexism, Heterosexism, and Gender Binarism for Health Equity Research: From Structural Injustice to Embodied Harm-An Ecosocial Analysis.

Racism. Sexism. Heterosexism. Gender binarism. Together, they comprise intimately harmful, distinct, and entangled societal systems of self-serving domination and privilege that structure the embodiment of health inequities. Guided by the ecosocial theory of disease distribution, I synthesize key features of the specified "isms" and provide a measurement schema, informed by research from both the Global North and the Global South. Metrics discussed include (a) structural, including explicit rules and laws, nonexplicit rules and laws, and area-based or institutional nonrule measures; and (b) individual-level (exposures and internalized) measures, including explicit self-report, implicit, and experimental. Recommendations include (a) expanding the use of structural measures to extend beyond the current primary emphasis on psychosocial individual-level measures; (b) analyzing exposure in relation to both life course and historical generation; (c) developing measures of anti-isms; and (d) developing terrestrially grounded measures that can reveal links between the structural drivers of unjust isms and their toll on environmental degradation, climate change, and health inequities.

Cases in Precision Medicine: Concerns About Privacy and Discrimination After Genomic Sequencing.

Patients and research participants have indicated that privacy of their genetic test results is an important concern, particularly with respect to insurance coverage. Internists and other physicians whose patients ask about legal protections for information generated by genome sequencing for clinical purposes can provide both reassurance and caution. Protections for medical information in general, as well as laws in some states that provide additional safeguards for genetic data, should reassure patients that this information will remain private. Patients themselves will need to weigh the risks versus the benefits of generating genomic data in deciding whether to undergo exome sequencing.

Clinical Algorithms, Antidiscrimination Laws, and Medical Device Regulation.

This Viewpoint discusses recent legal directives by the DHHS and FDA that could increase health care entities' liability for possible discriminatory biases of clinical algorithms and the need for additional legal clarity to avoid adverse effects on algorithm development and use.

The Fallacy of Choice: the Destructive Effect of School Vouchers on Children With Disabilities.

This Article addresses the impact of school voucher programs on students with disabilities. We show that for children with disabilities, the price of admission into so-called "school choice" programs is so high that it is effectively no real choice at all. School voucher programs require students with disabilities to sign away their robust federal rights and protections in the public school system. Under the Individuals with Disabilities Education Act (IDEA)--the preeminent legislative safeguard for students with disabilities--these rights include the right to a "free and appropriate public education" delivered through an "individualized education plan." By giving up these protections, children with disabilities are left at the mercy of private schools that have no legal obligation to provide them with an appropriate education, and, in the vast majority of cases, are not legally prohibited from discriminating against them on the basis of their disability. We argue that school voucher programs--including a proposed federal voucher program--put the education of students with disabilities back decades, and likely constitute a violation of the Equal Protection Clause of the U.S. Constitution.

Genetic Discrimination: A Case for a European Legislative Response?

With rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at EU level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in EU Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on 'genetic features.' The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States' federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the EU.

Safeguarding the ADA's Antidiscrimination Mandate: Subjecting Arrests to Title II Coverage.

The news has been peppered with tragic stories of individuals with disabilities who have been killed or injured following police encounters. In the aftermath of these incidents, as injured parties seek accountability, a question looms: Can arrest proceedings violate the Americans with Disabilities Act? The ADA was enacted to prohibit disability discrimination. The law had an ambitious agenda, supported by broad statutory authority, to ensure equality in all areas of public life for individuals with disabilities. But while the ADA has fostered integration into many aspects of modern life, one area remains deeply contested: arrests. If Congress envisioned that Americans with disabilities would enjoy lives free from discrimination, excluding arrests from ADA coverage undermines the law's broad promise of protection. In 2015, a Supreme Court opinion raised but failed to resolve this very issue, leaving an important question unanswered. This Note examines whether arrest proceedings must comply with the ADA and argues that they should. It then proposes comprehensive disability training as a tool to aid ADA compliance and avoid discriminatory arrest proceedings.

Mental Health of Transgender Veterans in US States With and Without Discrimination and Hate Crime Legal Protection.

OBJECTIVES: To examine whether indicators of community- and state-level lesbian, gay, bisexual, and transgender equality are associated with transgender veterans' mental health. METHODS: We extracted Veterans Administration data for patients who were diagnosed with gender identity disorder, had at least 1 visit in 2013, and lived in a zip code with a Municipality Equality Index score (n = 1640). We examined the associations of whether a state included transgender status in employment nondiscrimination laws and in hate crimes laws with mood disorders; alcohol, illicit drug, and tobacco use disorders; posttraumatic stress disorder; and suicidal ideation or attempt. RESULTS: Nearly half (47.3%) of the sample lived in states with employment discrimination protection, and 44.8% lived in states with hate crimes protection. Employment nondiscrimination protection was associated with 26% decreased odds of mood disorders (adjusted odds ratio [AOR] = 0.74; 95% confidence interval [CI] = 0.59, 0.93) and 43% decreased odds of self-directed violence (AOR = 0.57; 95% CI = 0.34, 0.95). CONCLUSIONS: Understanding lesbian, gay, bisexual, and transgender social stressors can inform treatment and care coordination for transgender populations.

The U.N. Convention on the Rights of the Child: Relevance and Application to Pediatric Clinical Bioethics.

This article provides an overview of the relevance and import of the U.N. Convention on the Rights of the Child (CRC) to child health practice and pediatric bioethics. We discuss the four general principles of the CRC that apply to the implementation of all rights contained in the document, the right to health articulated in Article 24, and the important position ascribed to parents in fulfilling the rights of their children. We then examine how the CRC is implemented and monitored in law and practice. The CRC and associated principles of child rights provide strategies for rights-based approaches to clinical practice and health systems, as well as to policy design, professional training, and health services research. In light of the relevance of the CRC and principles of child rights to children's health and child health practice, it follows that there is an intersection between child rights and pediatric bioethics. Pediatric bioethicists and child rights advocates should work together to define this intersection in all domains of pediatric practice.

Discrimination, poor mental health, and mental illness.

Discrimination is a major public health issue. Discrimination is known and well recognized to be associated with poor physical and mental health, as well as creating social divisions and fear that undermines the success of society and economic progress. Policies to eradicate discrimination and prejudice in the public sphere, and in public life, need thoughtful and careful planning and engagement by all public institutions and in the way they conduct their business. This forms the basis of social justice. Employers, politicians, and public servants, as well as other stakeholders, irrespective of their professional status, all have ethical responsibilities to uphold such actions and policies, values, and supporting behaviours, as a core principle of successful societies.

Nondiscrimination in Health Programs and Activities. Final rule.

This final rule implements Section 1557 of the Affordable Care Act (ACA) (Section 1557). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities. The final rule clarifies and codifies existing nondiscrimination requirements and sets forth new standards to implement Section 1557, particularly with respect to the prohibition of discrimination on the basis of sex in health programs other than those provided by educational institutions and the prohibition of various forms of discrimination in health programs administered by the Department of Health and Human Services (HHS or the Department) and entities established under Title I of the ACA. In addition, the Secretary is authorized to prescribe the Department's governance, conduct, and performance of its business, including, here, how HHS will apply the standards of Section 1557 to HHS-administered health programs and activities.