Participation In Genetic Research Research Articles

Factors affecting the willingness of African-American and American Indian/Alaska Native communities to engage in genetic and biomarker research: The UBIGR study

BackgroundDespite the disproportionate impact of Alzheimer’s disease (AD) dementia on Black/African-American and American Indian/Alaska Native groups, they have been underrepresented in biomarker research. Research investigating underrepresented groups’ willingness to engage in research has primarily relied on qualitative research and/or specialized samples (e.g., patients’ first-degree relatives). Similarly, extant quantitative studies include disproportionately small numbers of these participants. This investigation aimed to understand preclinical biomarker and genetic AD research participation in underrepresented groups to facilitate greater diversity in future biomarker research and clinical trials. MethodWe administered an online questionnaire to 599 Black/African-American, 120 American Indian/Alaska Native, and 725 NonHispanic White adults and assessed demographic characteristics and participants’ views on dementia, research, and genetic and preclinical biomarker testing. Attitudes toward research were examined using the standardized 7-item Research Attitudes Questionnaire (RAQ) measure. Using structural equation modeling, we tested a priori hypotheses regarding willingness to engage in AD preclinical biomarker testing. The specific survey item used as the outcome measure asked for agreement with the statement: “I would be willing to undergo any type of testing necessary if it was the only way to find out if I was at risk for AD before there were any symptoms,” answered on a Likert scale (1=strongly disagree – 7=strongly agree). ResultsThe three groups differed significantly in their attitudes toward research, as measured by total RAQ scores. Despite no differences in opinion regarding the overall usefulness of biomarkers, the ethnoracial groups differed in their willingness to engage in preclinical biomarker testing for dementia. Path analysis revealed an excellent model fit, indicating that attitudes toward research, as measured by the RAQ, influenced biomarker testing willingness. These findings suggest the need for outreach and engagement programs to occur before attempting research recruitment, particularly with BIPOC populations.

413 Perceptions and Concerns: Navigating Genetic Research Participation Among At-Risk Individuals for Inherited Conditions

OBJECTIVES/GOALS: Motivations and hesitations about participating in genetic research among those at risk of inherited conditions are unclear. We aim to understand perceptions, perspectives, and concerns of these individuals regarding genetic research studies, especially for hard-to-diagnose diseases. METHODS/STUDY POPULATION: Mix method study of 150 Hispanics individuals in Puerto Rico (PR) at risk for in heriting a condition. These individuals, with limited diagnostic data, are attending genetics clinics or invited to a genetics study at the University of Puerto Rico Medical Sciences Campus. Structured surveys and interviews will be conducted. Surveys will gauge general perceptions and feelings toward genetic research, while interviews will provide a deeper understanding of participants’ personal narratives and experiences. All sessions will be recorded, transcribed, and analyzed using NVivo qualitative analysis software. Thematic analysis will be employed to identify recurring themes and sentiments. RESULTS/ANTICIPATED RESULTS: Weanticipatevaried responses: some enthusiastic about genetic research benefits, others having reservations due to privacy, cultural beliefs, or past experiences. A significant portion may express concerns about genetic research’s impact on insurance and potential discrimination. We also expect to uncover systemic challenges that hinder participation among Hispanics living in PR, such as a lack of information or misconceptions about genetic research. This study will overview factors, both encouraging and inhibitory, influencing decisions to join genetic research. Quantitative genetic literacy survey data will undergo descriptive analysis and multivariate logistic regression. DISCUSSION/SIGNIFICANCE: Hispanics in PR exhibit a rich tapestry of genetic variations being a focal point for genetic research. Understanding perceptions is vital among those at risk for inherited conditions. Insights can shape outreach and education strategies, ensuring participants are informed, concerns met, and empowered to make decisions alignined their views.

Genetic research within Indigenous communities: Engagement opportunities and pathways forward

PurposeAgainst a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that affect researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the United States participating in genetic research. MethodsWe conducted 42 semistructured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the United States to explore perceived risks, benefits, barriers, and facilitators of genetic research participation. ResultsParticipants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research, as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms—such as sample and data misuse, stigmatization, or misrepresentation by researchers—revealed strategies for building trust to create more equitable and reciprocal research partnerships. ConclusionParticipants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers.

Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance.

Fear of insurance discrimination can inhibit genetic research participation. In 2019, an industry-led partial moratorium on using genetic results in Australian life insurance underwriting was introduced. This mixed-methods study used online surveys (n = 59 participants) and semi-structured interviews (n = 22 participants) to capture researchers' perceptions about the moratorium. 66% (n = 39/59) were aware of the moratorium before the survey. Of researchers returning genetic results, 56% (n = 22/39) reported that insurance implications were mentioned in consent forms, but a minority reported updating consent forms post-moratorium (n = 13/39, 33%). Most researchers reported that concerns regarding life insurers utilizing research results inhibited recruitment (35/59, 59%), and few perceived that the moratorium positively influenced participation (n = 9/39, 23%). These findings were supported by qualitative findings which revealed that genetic discrimination concerns were a major issue for some individuals, though these concerns could be eclipsed by the promise of a diagnosis through research participation. The majority thought a regulatory solution should be permanent (n = 34/51, 67%), have financial limits of at least ≥1,000,000 AUD (37/51, 73%), and involve government oversight/legislation (n = 44/51, 86%). In an era where an increasing number of research studies involve genomics as a primary or secondary objective, it is crucial that we have regulatory solutions to address participants' hesitation.

Understanding what drives genetic study participation: Perspectives of patients, carers, and relatives.

Genetic research's growing importance in understanding pulmonary arterial hypertension (PAH) and developing effective treatments prompted the RAPID-PAH study. This study sought feedback from stakeholders who participated in two genomic studies to enhance genetic study delivery and clinical integration. Stakeholders from nine UK PH centres, representing various roles, ages, genders, and mutation statuses, took part in 53 semi-structured interviews and focus groups. Transcripts were thematically coded using inductive analysis. Clustering analysis was conducted to identify patient groups that shared attitudes. In this paper, we focus on patients', carers', and relatives' perspectives. The key interview themes revealed insights into participants' attitudes toward genetic research and testing more generally, expertise and knowledge of the disease itself, motivations and barriers to participating in genetic research, awareness of and interest in consent procedures and the use of personal and genetic data, as well as the process of communicating individual genetic results. Factors influencing genetic research participation included altruistic motives, personal diagnostic experiences, and family-related hopes. Clustering analysis produced distinct clusters based on the presence of barriers and motivators for research participation; however, hardly any patients shared identical sets of attitudes, emphasising the need for personalised approaches to recruitment. Most patients reported poor engagement with study-related materials. Patients who received individual genetic results expressed satisfaction with the process, whereas those who did not were disappointed with the lack of feedback. Reflecting on patient perspectives, we offer recommendations to improve the genetic study delivery process. Enhancing genetic research integration into clinical practice requires tailored engagement, clear communication, and support from healthcare stakeholders.

Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: A survey study

AbstractBackgroundApolipoprotein‐E (APOE) genetic susceptiblity testing for Alzheimer’s disease (AD) dementia is becoming more important as clinical trials are increasingly targeting individuals carrying APOE4‐genotypes. As little is known about about the interest in knowing genetic risk for AD dementia in the general population. Our objective was to examine this in a sample of cognitively normal adults within a population‐based online research registry with the goal to implement APOEε4 status for trial recruitment.MethodAn online survey was completed by 442 cognitively normal participants between the age of 49 and 75 years (56% female) from the Dutch Brain Research Registry. The survey assessed interest in participation in research into, and disclosure of, genetic risk for dementia, and the knowing their genetic risk in different hypothetical risk scenarios (10%, 30%, and 50% genetic risk for dementia at age 85, corresponding to APOEε2/ε2 or ε2/ε3, APOEε3/ε4 or ε2ε4, and APOEε4/ε4 genotypes). All hypothetical scenarios were randomly presented to all participants. Cochran’s Q‐tests was used to analyse differences in frequencies across scenarios.ResultThe vast majority of participants was interested in participating in research and disclosure of their genetic risk (81%; Figure 1). The most reported reason was to contribute to scientific research (94%). Interest was higher in males, while lower‐educated participants more often reported to be unsure. When provided with different risk scenario’s, interest in knowing their risk was somewhat higher in the scenario’s with higher risk (50% scenario (79%) and 30% scenario (77%)) than in the 10% scenario (73%; χ2(2) = 19.91;p<.001). Most individuals expected they would share their genetic risk with close relatives (77‐89%), would participate in medication trials (79‐88%), and would make long‐term arrangements, e.g. retirement, health care, will (69‐82%), with larger proportions for scenarios with higher hypothetical genetic risk.ConclusionOur findings indicate that the vast majority of cognitively normal adults participating in a research registry is interested in AD genetic risk research participation and disclosure. Interest in genetic risk disclosure is higher in scenarios corresponding to the APOEε4 genotypes. This suggests APOEε4 screening within an online research registry is potentially a well‐received method to accelerate inclusion for preclinical trials ultimately disclosing genetic risk.

Factors that influence a patient's decision to engage in genetic research.

The most challenging step in clinical research studies is patient recruitment. Many research studies do not reach their targets because of participant rejection. The purpose of this study was to assess patient as well as the community knowledge, motivation, and barriers to participate in genetic research. A cross-section study was conducted between September 2018 and February 2020 using face-to-face interviews with candidate patients from outpatient clinics at King Fahad Medical City (KFMC), Riyadh, Saudi Arabia. Additionally, an online survey was conducted to assess the community's knowledge, motivation and barriers to participate in genetic research studies. In total, 470 patients were interviewed for this study, with 341 being successfully recruited for the face to face interview, and the other patients being refused owing to time constraints. The majority percentage of the respondents were females. The respondents' mean age was 30, and 52.6% reported having a college degree. The survey results from 388 participants illustrated that around 90% of the participants, participated voluntarily due to a good understanding of genetics studies. The majority held positive attitudes toward being part of genetic research, which exceeded the reported motivation score of >75%. The survey indicated that >90% of individuals were willing to participate to acquire therapeutic benefits or to receive continued aftercare. However, 54.6% of survey participants were worried about the side effects and the risks involved in genetic testing. A higher proportion (71.4%) of respondents reported that lack of knowledge about genetic research was one of the barriers to rejecting participation. Respondents reported relatively high motivation and knowledge for participation in genetic research. However, study participants reported "do not know enough about genetic research" and "lack of time during clinic visit" as a barrier for participation in genetic research.

Influences of race and clinical variables on psychiatric genetic research participation: Results from a schizophrenia sample.

Advances in genetics has led to a better understanding of both genetic and environmental contributions to psychiatric mental health disorders. But psychiatric genetics research is predominantly Eurocentric, and individuals of non-European ancestry continue to be significantly underrepresented in research studies with potential to worsen existing mental health disparities. The objective of this study was to examine factors associated with genetic study participation in a schizophrenia sample. The study sample was extracted from the Clinical Antipsychotics Trial of Intervention Effectiveness (CATIE) schizophrenia study which enrolled 1493 patients with chronic schizophrenia between the ages of 18-65 years and incorporated an optional genetic sub-study. Using a logistic regression model (N = 1249), we examined sociodemographic and clinical variables that were independently associated with the outcome i.e., participation in the genetic sub-study. The genetic sub-study had a lower proportion of Black (30% in genetic vs 40% in CATIE overall) and other race (4% vs 6%) participants. Increased severity of psychopathology symptoms (odds ratio [OR] = 0.78, p = 0.004) decreased the odds whereas better reasoning scores (OR = 1.16, p = 0.036) increased the odds of genetic study participation. Compared to Black participants, White participants were significantly more likely to participate in the genetic sub-study (OR = 1.43, p = 0.009). Clinical factors in addition to race significantly impact genetic study participation of individuals with chronic schizophrenia. Our findings highlight the need for future research that examines the interactive effects of race and clinical factors such as symptom severity on psychiatrically ill individuals' choice to participate in genetics studies and to identify targeted strategies to increase equitable representation in psychiatric genetics research.

Influences of race and clinical variables on psychiatric genetic research participation: Results from a schizophrenia sample

Influences of race and clinical variables on psychiatric genetic research participation: Results from a schizophrenia sample

Understanding changes in genetic literacy over time and in genetic research participants

As genomic and personalized medicine becomes mainstream, assessing and understanding the public's genetic literacy is paramount. Because genetic research drives innovation and involves much of the public, it is equally important to assess its impact on genetic literacy. We designed a survey to assess genetic literacy in three ways (familiarity, knowledge, and skills) and distributed it to two distinct samples: 2,050 members of the general population and 2,023 individuals currently enrolled in a large-scale genetic research study. Wecompared these data to a similar survey implemented in 2013. The results indicate that familiarity with basic genetic terms in 2021 (M= 5.36 [range 1-7], p<0.001) and knowledge of genetic concepts in 2021 (M= 9.06 [56.6% correct], p= 0.002) are significantly higher compared to 2013 (familiarity: M= 5.08 [range 1-7]; knowledge: M= 8.72 [54.5% correct]). Those currently enrolled in a genetic study were also significantly more familiar with genetic terms (M= 5.79 [range 1-7], p<0.001) and more knowledgeable of genetic concepts (M= 10.57 [66.1% correct], p<0.001), and they scored higher in skills (M= 3.57 [59.5% correct], p<0.001) than the general population (M= 5.36 [range 1-7]; M= 9.06 [56.6% correct]; M= 2.65 [44.2% correct]). The results suggest that genetic literacy is improving over time, with room for improvement. We conclude that educational interventions are needed to ensure familiarity with and comprehension of basic genetic concepts and suggest further exploration of the impact of genetic research participation on genetic literacy to determine mechanisms for potential interventions.

Factors that influence genetic counselors' participation in research.

Genetic counselors have skills and expertise in genetics and patient care that make them an asset to research and research teams. However, the National Society of Genetic Counselors (NSGC) found in 2020 that more than half of practicing genetic counselors do not participate in research activities. Information describing factors that influence their research participation is lacking in the literature. This study ascertained genetic counselors' workplace and graduate training experiences to provide insight into factors that increase or decrease participation in research activities. A survey was distributed through the NSGC Student Research Survey Program. Practicing genetic counselors that graduated in or before 2020 were eligible to participate. The survey included questions about demographics, implementation of student research projects, research-specific resources in their graduate programs, perceived barriers and motivations, and current research activities. Interestingly, the majority of respondents participated in research activities between 2017 and 2021; the most common activities included: recognizing a gap(s) in knowledge (68%) and presenting an abstract or poster (64%). Factors that most significantly influenced genetic counselors' research participation included their interest in research (p=0.0037), their motivation to do research (p=0.0014), and their perceived intimidation by the research process (p < 0.001). These results provide insight into solutions for the workplace and graduate programs that could increase genetic counselors' research participation.

О некоторых вопросах правового регулирования статуса участников геномных исследований

Continuous development of social relations implies the need in constant improvement of primarily legislative regulation so that it could adapt to the current realities in the society and country. This assumption is true both with regard to the legal regulation of the status given to participants of genomic research, as this relatively new area of social relations embraces both public, and private interests. In this respect, legal regulation should consider certain principles such as the balance of public and private interests, protection of human rights and freedoms, protection of sensitive data by the law, protection of the national interests, etc. Nevertheless, normative legal regulation of the status of genomic research participants in the Russian Federation is not complex in nature yet. Thus, it fails to result in development of this area of social relations and ensuring the rights, freedoms and legitimate interests of the mentioned persons. It is necessary to settle the issue about the boundaries of the allowed behavior, rights, obligations, guarantees and liability of genetic research participants. It seems to be appropriate to develop a complex federal law about the legal status of genetic research participants in the Russian Federation. A general approach to arranging complex legal regulation in this field consists in systematization of the existing legal regulation considering legislative regulatory activity of the discovered issues in the field of using genetic technologies and conducting genome research. During the regulatory control, it is necessary to reflect common moral and ethical principles and standards of medical and genetic research.

“A Gift to My Family for Their Future”: Attitudes about Genetic Research Participation

Background: Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention. Objectives: The objective of the study was to assess motivations for, and concerns about, genetic research participation. Methods: The Genetics in Research and Health Care Survey was sent in winter 2017–2018 to 57,331 adult Kaiser Permanente (KP) members from 7 US regions to assess attitudes about genetic testing in health care and research. The survey included an open-ended question on why members would or would not participate in genetic research. Open text responses to this question were coded in the qualitative analysis software Dedoose and analyzed using a thematic analysis approach. Code summaries were organized by major themes, subthemes, and exemplary quotes. Results: Of the 10,369 participants who completed the survey, 2,645 (25%) provided a comment describing reasons they would or would not participate in research involving genetic testing. Respondents who provided a text comment were 64% female, 49% non-Hispanic (NH) White, 17% Asian/Pacific Islander, 20% Hispanic, and 14% NH Black. The primary themes identified were (1) altruism; (2) decision-making and planning; (3) data use; and (4) data security. These major themes were consistent across each race and ethnic group. Conclusions: To promote broad participation in genetic research, it is important that recruitment materials address the primary motivators for genetic research participation, including altruism and the potential use of results for personal decision-making. Study materials should also address concerns about possible misuse of genetic information and fears over potential data breaches.

The association between ethnicity and access to reproductive genetic services

Minority populations, such as Black and Latin-X people, have less access to both clinical genomic medicine and lower rates of participation in genetic research. The objective of this study is to assess the association between Black and Latin-X ethnicity and access to reproductive genetic services.

Self-Regulation of genetic studies in Russia: search for the optimal model

The article is devoted to the general analysis of self-regulatory practices of genetic research in Russia (conducted by public research institutions and commercial companies). Selfregulation is a special type of regulation, performed by organizations providing genetic research and their associations as well as by relevant professional and scientific community; it is regulated by local acts, agreements, memoranda, professional standards, codes of ethics, etc. and is aimed at establishing relationships in the field of organization, provision and use of results of genetic studies. Basically, selfregulation is especially critical in various aspects of organization and conducting genetic research in the worldwide perspective. The analysis provided by this article allows concluding that self-regulation practice in Russia is applied in several public research institutions, but rather fragmentarily. Moreover, the development of such form of regulation goes slowly. At the same time non-public genomic institutions are trying to evade any significant self-regulation of their activities; they do not provide for any expanded rules or standards of their practices (or they just confine themselves to references and general provisions which are not in line with the specifics of the mentioned activities). On the other hand, it is important to keep in mind that the current Russian legislation is full of gaps in terms of regulating genetic research process. Analysis of several websites of Russian private companies providing genetic profiling services revealed that those organizations almost never place complex information guides on their information portals; they neither provide the standards for performing genetic research in an intelligible form. The websites do not contain any information on possible risks or threats to health connected with application of medical procedures, while the issue of disclosure the gathered genomic information to third parties (e.g., enforcement agencies) is often ignored. More than that, there are hardly any published standards for conducting genomic research or documents on protecting patients rights, etc. Thus, we are forced to acknowledge that the institute of self-regulation in the field of genetic studies is not developed well enough in Russia. The current fragmented nature of legal regulation and selfregulation concerning genetic research may contribute to violation of rights and legitimate interests of patients in terms of confidentiality and safeguarding genetic information, gathered in the process of research. The state therefore should within the established goals of intensive genetic technological development provide all the necessary conditions (including of legal character). However, it is still not clear how the issues of legal regulation of status of genetic research participants, protection of genetic data, incentives for providing genetic research, etc. should be handled. We assume that one of the possible ways of tackling the aforementioned challenges is developing relevant complex legal regulation (including departmental acts) and/or investing the frontline public research institutions with special functions (i.e., within a special council, commission, or association). Such powers will contribute to regulating certain aspects of administering and conducting genetic research and using its results in the framework of legal regulation, which should be mandatory, including for non-public organizations, offering genetic services in the territory of the Russian Federation.

Views of university students in Jordan towards Biobanking

BackgroundBiobanks are considered primary means+ of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a cornerstone for their success.AimsThis study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan.MethodologyAn online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing the decision to participate.ResultsResponses from 435 students revealed that 52.9% previously heard of biobanks. There was an overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, informed consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, the vagueness of the type of research performed on the biospecimens and the unavailability of general research results to the donor had a negative connotation. There was no clear agreement on the type of informed consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred the disposal of biospecimens and information when deciding to withdraw from participation.ConclusionThere is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

FarGen – participants in the genetic research infrastructure of the Faroe Islands

Background: The demographic history of the Faroe Islands makes this isolated population – founded in the 9th century – interesting for genetic research. The goal of the FarGen project was to recruit individuals to the FarGen infrastructure to promote research into the genetic features of the Faroese people, and to develop a reference panel of population-specific variants. We aimed to recruit 1500 individuals. Participation was voluntary; participants had to donate a blood sample for whole-genome sequencing, and had to answer a questionnaire regarding sociodemographics, health, motivation and attitude towards participation in genetic research. Methods: A total of 1541 participants voluntarily joined the project, donated a blood sample and returned the questionnaire. Results: Answers from the questionnaire show that participants are, in general, European, have children, have a relatively high level of education, rate their health to be good, are willing to participate in future health-related research, and were motivated to sign up primarily to participate in research to help others and local research competency building. Conclusions: Overall, the initial cohort of the FarGen infrastructure comprises 3% of the Faroese population, and represents the general population well based on the collected sociodemographic data. However, there is an excess of women, and some geographic sub-regions and age groups are slightly underrepresented. We find the recruitment method with voluntary sign-up appropriate, and knowledge acquired through the first phase will aid the next phase of the project, with the aim of expanding the FarGen cohort with additional individuals, bio-specimens and body measurements in order to perform multifactorial analyses.

Investigating perceived heritability of mental health disorders and attitudes toward genetic testing in the United States, United Kingdom, and Australia.

Our beliefs about the heritability of psychiatric traits may influence how we respond to the use of genetic information in this area. In the present study, we aim to inform future education campaigns as well as genetic counseling interventions by exploring common fears and misunderstandings associated with learning about genetic predispositions for mental health disorders. We surveyed 3,646 genetic research participants from Australia, and 960 members of the public from the United Kingdom, and the United States, and evaluated attitudes toward psychiatric genetic testing. Participants were asked hypothetical questions about their interest in psychiatric genetic testing, perceived usefulness of psychiatric genetic testing, and beliefs about malleability of behavior, among others. We also asked them to estimate the heritability of alcohol dependence, schizophrenia, and major depression. We found a high interest in psychiatric genetic testing. In most cases, more than a third of the participants showed serious concerns related to learning about personal genetic predisposition, such as not wanting to have children if they knew they had a high genetic predisposition, or not wanting to choose a partner with a high genetic predisposition for a mental health problem. Finally, we found a significant association between most participants' attitudes and their lay estimates of heritability, which highlights the complexity of educating the public about genetics.

Participation in genetic research among Latinx populations by Latin America birth-residency concordance: a global study.

Latinx populations are underrepresented in DNA-based research, and risk not benefiting from research if underrepresentation continues. Latinx populations are heterogenous; reflect complex social, migration, and colonial histories; and form strong global diasporas. We conducted a global study using a survey tool (Amazon's Mechanical Turk portal) to ascertain willingness to participate in genetic research by Latin America birth-residency concordance. Participants in the global study identified as Latinx (n=250) were classified as the following: (1) born/live outside of Latin America and the Caribbean (LAC), (2) born within/live outside LAC, and (3) born/live within LAC. Latinx were similarly likely to indicated they would participate DNA-based research as their non-Latinx counterparts (52.8% vs. 56.2%, respectively). Latinx born and living in LAC were significantly more willing to participate in DNA-based research than Latinx born and living outside of LAC (OR: 2.5; 95% CI: 1.3, 4.9, p<.01). Latinx indicating they would participate in genetic research were more likely to trust researchers (<.05), believe genetic research could lead to better understanding of disease (<.05), and that genetic research could lead to new treatments (p<.05) when compared with Latinx not interested in participating in genetic research. In summary, significant variation exists in genetic research interest among Latinx based on where they were born and live, suggesting that this context itself independently influences decisions about participation. Cultivating and investing in a research ecosystem that addresses, values, and respects Latinx priorities, circumstances, and researchers would likely increase research participation and, even more importantly, potentially impact the inequitable health disparities disproportionately represented in Latinx communities.

Genetic Afterlives: Black Jewish Indigeneity in South Africa by Noah Tamarkin

Reviewed by: Genetic Afterlives: Black Jewish Indigeneity in South Africa by Noah Tamarkin Kimberly A. Arkin Noah Tamarkin, Genetic Afterlives: Black Jewish Indigeneity in South Africa. Durham: Duke University Press, 2020. 280 pp. Noah Tamarkin's Genetic Afterlives: Black Jewish Indigeneity in South Africa is a fascinating exploration of why and how the Lemba of South Africa became interested in and engaged with genetic studies of Jewishness. In the late 1990s and early 2000s, Lemba leaders—most particularly the entrepreneurial, unrecognized traditional Lemba leader Kgoshi Mpaketsane and members of the Lemba Cultural Association (LCA)—eagerly agreed to and facilitated testing of male elders. They also celebrated the results of these studies, which documented high incidences of the so-called "Cohen Modal Haplotype" on the Y chromosomes of Lemba test subjects. The high frequency of this haplotype, which got its name from its relative frequency in the genomes of men who claim descent from Cohanim, or the Jewish priestly class, offered a particularly useful kind of "proof" for many Lemba of what they had always already known: they were black Jews. Unlike much of the flourishing anthropological literature on DNA science, Tamarkin is not interested in what happens in genetics labs or in the ways that scientists involved in this kind of research (sometimes inadvertently) naturalize certain kinds of social categories. Instead, he traces out what he calls "genetic afterlives," by which he means the production and circulation of genetic knowledge that happens outside of laboratories and peer-reviewed journals. In particular, he asks how subjects of genetic research make sense of and produce their own stories with genetic research. He writes: [End Page 187] My contention is that there are multiple worlds in play in this kind of genetic research that are not necessarily shared among all actors, and if we focus on the knowledge politics of scientists exclusively, it is at the expense of other, less powerful actors who ultimately must continue to live with genetic ancestry's implications in ways that geneticists are not subjected to (25). And indeed, without attending to these "afterlives," the Lemba's voluntary participation in Jewish genetic research might look like support for the racializing logics behind long-standing European interest in Lemba as Jews. For late 19th and early 20th century colonial researchers who conflated race, place, and culture, Lemba Jewishness solved a particular kind of categorical problem: the existence of a Bantu population with "non-Bantu" cultural practices, including a refusal to eat pork, the practice of endogamy, and a commitment to early circumcision. Jewishness solved this problem by giving the Lemba "extra-African" origins. For late 20th and early 21st century scientists interested in "Jewish DNA," genetic ancestry testing has been a way to document not only the relatedness of (predominantly white) Jewish populations all over the globe, but also the difference between Jews and other "Semitic" populations, most notably Palestinians. Much like its antecedent in the colonial period, this project also seeks to solve a particular kind of problem by offering genetic "proof" of Jewish indigeneity in Israel, exile from Israel, and persistent, distinctive peoplehood in diaspora. But Mpaketsane and other members of the LCA firmly rejected the foundational premises of both of these projects. For many Lemba, genetic Jewishness is not a sign of non-Africanness. Instead, Tamarkin's interlocutors insisted in a whole range of ways that all Jews were originally African and that therefore they were the original Jews. As a result, many Lemba argued against the idea that they were a "lost" tribe with residual Jewish practices. They were also not a victimized population in need of being "rescued" and "returned" to an Israeli homeland. Nor did they need to stop being Christian in order to be Jewish. Furthermore, Lemba cultural leaders insisted that they had always known they were Jewish and had not needed a test to provide this information. So why, exactly, were they eager participants in this research? Tamarkin shows why through a masterful ethnographic exploration of the way scale and context matter in the production of genetic meaning. His first chapter attends to the apartheid history of Lemba engagement [End Page 188] with questions of Jewishness and ancestry. The second chapter...