Henrietta Lacks and America’s dark history of research involving African Americans

Baptiste, Diana Lyn; Caviness‐Ashe, Nicole; Josiah, Nia; Commodore‐Mensah, Yvonne; Arscott, Joyell; Wilson, Patty R.; Starks, Shaquita

doi:10.1002/nop2.1257

Cited by 23 publications

(12 citation statements)

References 8 publications

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“…There is not a one‐size fits all approach for recruiting diverse participants. For example, while mistrust of biomedical research resulting from historical events (e.g., Tuskegee Syphilis Study, HeLa cells) 39 are often cited for low participation among Black and AI/AN peoples, recent studies have shown that low invitation rates may be to blame for low participation among Black individuals 40 . Meanwhile, American Indian/Alaska Native communities report a lack of involvement in study planning and use of research methods that do not respect community traditions, leading to hesitancy about participating in genomics research 41,42 .…”

Section: Discussionmentioning

confidence: 99%

The power of representation: Statistical analysis of diversity in US Alzheimer's disease genetics data

Xue,

Blue,

Conomos

et al. 2024

A&D Transl Res & Clin Interv

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INTRODUCTIONAlzheimer's disease (AD) is a complex disease influenced by genetics and environment. More than 75 susceptibility loci have been linked to late‐onset AD, but most of these loci were discovered in genome‐wide association studies (GWAS) exclusive to non‐Hispanic White individuals. There are wide disparities in AD risk across racially stratified groups, and while these disparities are not due to genetic differences, underrepresentation in genetic research can further exacerbate and contribute to their persistence. We investigated the racial/ethnic representation of participants in United States (US)‐based AD genetics and the statistical implications of current representation.METHODSWe compared racial/ethnic data of participants from array and sequencing studies in US AD genetics databases, including National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) and NIAGADS Data Sharing Service (dssNIAGADS), to AD and related dementia (ADRD) prevalence and mortality. We then simulated the statistical power of these datasets to identify risk variants from non‐White populations.RESULTSThere is insufficient statistical power (probability <80%) to detect single nucleotide polymorphisms (SNPs) with low to moderate effect sizes (odds ratio [OR]<1.5) using array data from Black and Hispanic participants; studies of Asian participants are not powered to detect variants OR <= 2. Using available and projected sequencing data from Black and Hispanic participants, risk variants with OR = 1.2 are detectable at high allele frequencies. Sample sizes remain insufficiently powered to detect these variants in Asian populations.DISCUSSIONAD genetics datasets are largely representative of US ADRD burden. However, there is a wide discrepancy between proportional representation and statistically meaningful representation. Most variation identified in GWAS of non‐Hispanic White individuals have low to moderate effects. Comparable risk variants in non‐White populations are not detectable given current sample sizes, which could lead to disparities in future studies and drug development. We urge AD genetics researchers and institutions to continue investing in recruiting diverse participants and use community‐based participatory research practices.

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Section: Discussionmentioning

confidence: 99%

The power of representation: Statistical analysis of diversity in US Alzheimer's disease genetics data

Xue,

Blue,

Conomos

et al. 2024

A&D Transl Res & Clin Interv

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“…The inequitable allocation of resources (eg, the education system) could be due to multiple factors, including reduced neighborhood safety; access to green space, health care, and education; and diminished opportunities for upward mobility, resulting in individuals residing in disadvantaged neighborhoods for longer . These factors can negatively affect physical activity levels, particularly for Black communities, which have historically lower trust in health care and research due to historical discrimination from significant events such as Sims, Lacks, and Tuskegee …”

Section: Discussionmentioning

confidence: 99%

“…32 These factors can negatively affect physical activity levels, particularly for Black communities, which have historically lower trust in health care and research 51,52 due to historical discrimination from significant events such as Sims, Lacks, and Tuskegee. 53 There was also poorer retention of Black compared with White families, which likely contributed to lower overall wear time. Future wearable device research should address various sociotechnical and human factors to improve wearable device-based data collection.…”

Section: Discussionmentioning

confidence: 99%

Association of Demographic and Socioeconomic Indicators With the Use of Wearable Devices Among Children

et al. 2023

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ImportanceThe use of consumer-grade wearable devices for collecting data for biomedical research may be associated with social determinants of health (SDoHs) linked to people’s understanding of and willingness to join and remain engaged in remote health studies.ObjectiveTo examine whether demographic and socioeconomic indicators are associated with willingness to join a wearable device study and adherence to wearable data collection in children.Design, Setting, and ParticipantsThis cohort study used wearable device usage data collected from 10 414 participants (aged 11-13 years) at the year-2 follow-up (2018-2020) of the ongoing Adolescent Brain and Cognitive Development (ABCD) Study, performed at 21 sites across the United States. Data were analyzed from November 2021 to July 2022.Main Outcomes and MeasuresThe 2 primary outcomes were (1) participant retention in the wearable device substudy and (2) total device wear time during the 21-day observation period. Associations between the primary end points and sociodemographic and economic indicators were examined.ResultsThe mean (SD) age of the 10 414 participants was 12.00 (0.72) years, with 5444 (52.3%) male participants. Overall, 1424 participants (13.7%) were Black; 2048 (19.7%), Hispanic; and 5615 (53.9%) White. Substantial differences were observed between the cohort that participated and shared wearable device data (wearable device cohort [WDC]; 7424 participants [71.3%]) compared with those who did not participate or share data (no wearable device cohort [NWDC]; 2900 participants [28.7%]). Black children were significantly underrepresented (−59%) in the WDC (847 [11.4%]) compared with the NWDC (577 [19.3%]; P &lt; .001). In contrast, White children were overrepresented (+132%) in the WDC (4301 [57.9%]) vs the NWDC (1314 [43.9%]; P &lt; .001). Children from low-income households (&lt;$24 999) were significantly underrepresented in WDC (638 [8.6%]) compared with NWDC (492 [16.5%]; P &lt; .001). Overall, Black children were retained for a substantially shorter duration (16 days; 95% CI, 14-17 days) compared with White children (21 days; 95% CI, 21-21 days; P &lt; .001) in the wearable device substudy. In addition, total device wear time during the observation was notably different between Black vs White children (β = −43.00 hours; 95% CI, −55.11 to −30.88 hours; P &lt; .001).Conclusions and RelevanceIn this cohort study, large-scale wearable device data collected from children showed considerable differences between White and Black children in terms of enrollment and daily wear time. While wearable devices provide an opportunity for real-time, high-frequency contextual monitoring of individuals’ health, future studies should account for and address considerable representational bias in wearable data collection associated with demographic and SDoH factors.

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“…Extremely low covid-19 vaccine uptake among Black pregnant people,4445 may reflect the intersection of historical mistrust of medical research with contemporary misinformation campaigns targeted at Black people 464748. Lack of clinical trial data on pregnant people and misinformation about the vaccine brought confusion and feelings of exclusion 49.…”

Section: Healthcare Dynamics and Inequitymentioning

confidence: 99%

Race, racism, and covid-19 in the US: lessons not learnt

Bentley-Edwards,

Adisa,

Ruff

et al. 2024

BMJ

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Henrietta Lacks and America’s dark history of research involving African Americans

Cited by 23 publications

References 8 publications

The power of representation: Statistical analysis of diversity in US Alzheimer's disease genetics data

The power of representation: Statistical analysis of diversity in US Alzheimer's disease genetics data

Association of Demographic and Socioeconomic Indicators With the Use of Wearable Devices Among Children

Race, racism, and covid-19 in the US: lessons not learnt

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