Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM
性少数群体的遗传隐私和身份:GetPrISM
基本信息
- 批准号:10005405
- 负责人:
- 金额:$ 21.25万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2019
- 资助国家:美国
- 起止时间:2019-09-01 至 2022-08-31
- 项目状态:已结题
- 来源:
- 关键词:Academic Medical CentersAddressAdvocateAffectAttitudeBehavioralBiological FactorsCharacteristicsClinicCollectionCommunitiesComplexCountryDataData AnalysesEducational MaterialsEnrollmentEnsureEnvironmentEthicsFocus GroupsFrightGaysGender IdentityGenesGeneticGenetic IdentityGenetic PrivacyGenetic ResearchGenetic VariationGenomicsGoalsHealthHealthcareHeritabilityIndividualLeadershipMethodsMinorityMinority GroupsParticipantPhenotypePilot ProjectsPlayPoliciesPoliticsPopulationPrivacyProtocols documentationQualitative ResearchRecording of previous eventsReportingResearchResearch PersonnelRoleSex OrientationSexual and Gender MinoritiesSiteSocietiesTimeTranslationsUnited States National Institutes of Healthcohortdata sharingethical legal social implicationevidence baseexperiencegenomic datahealth disparityimprovedmemberminority communitiesprecision medicineprogramsresearch in practicerisk perceptionsexual minoritysocialsocial stigmatooltraitwillingness
项目摘要
Sexual and gender minorities (SGMs) experience significant disparities in health and health care. These
inequities result from complex interactions among social, political, environmental, and genomic factors, all of
which must be understood if we are to address these disparities. The research needed to understand the health
issues faced by SGM populations will often require analysis of large collections of individual phenotypic and
behavioral information, community characteristics, and large-scale genomic data. Some investigators may seek
to explore hypotheses that sexual orientation and gender identity are complex traits with a polygenic, but non-
determinative component and that those genetic components may contribute to health disparities. These
research strategies, which analyze large amounts of genomic and other data, represent a dramatic change from
earlier research practices in their implications for research participants. The history of research involving SGMs
has been particularly controversial, especially in the wake of the ultimately unsuccessful search for a “gay gene”
in the 1990s. Some writers at the time supported the search for genetic contributions to sexual orientation in
order to decrease stigma. Others opposed this research for fear that the results would be used to discriminate
against SGMs. Even now, surprisingly little is known about what SGMs think about research involving genetics
and sexual orientation and gender identity (SOGI) data or whether they would be willing to participate in such
research. A recent study reported that SGMs, in a hypothetical setting, expressed greater willingness than others
to take part in the All of Us Cohort Program, whereas a comprehensive review cited several studies showing that
SGMs were more reluctant to enroll in genomics research due to fears of misinterpretation. Identifying and
addressing these concerns is crucial not only to protecting/representing the SGM community, but also to inviting
participation of these groups to ensure their access to precision medicine.
The overarching goal of this application is to investigate perspectives on research using genetic and SOGI data
among a diverse group of self-identifying SGM community members. We will use a qualitative approach to
examine the following two aims: 1) To identify and understand the range of perspectives about research involving
genetic and SOGI data, including perceptions of risks, harms, and benefits to individuals of conducting research
on biological factors related to health problems as well as related to sexual orientation and gender identity; and
2) To characterize SGM attitudes and opinions about the appropriateness of genetic research using SOGI data
and the issues they would want to see addressed and safeguards they would require before participating in
research. This project will allow us to refine strategies for use at other sites to enhance the generalizability of our
findings and to develop a robust evidence base for developing ethically acceptable research protocols that will
identify and address the health disparities affecting SGMs.
性和性别少数群体在健康和医疗保健方面经历着巨大的差距。这些
不平等是由社会、政治、环境和基因组因素之间复杂的相互作用造成的,所有这些因素
如果我们要解决这些差异,就必须理解这一点。这项研究需要了解
SGM群体面临的问题通常需要分析大量的个体表型和
行为信息、社区特征和大规模基因组数据。一些调查人员可能会寻求
探索性取向和性别认同是复杂的多基因特征,但非
这些遗传因素可能导致健康差异。这些
分析大量基因组数据和其他数据的研究策略,代表了一个巨大的变化,
早期的研究实践对研究参与者的影响。涉及SGM的研究历史
尤其是在最终未能成功寻找“同性恋基因”之后,
在20世纪90年代当时的一些作家支持寻找基因对性取向的贡献,
减少耻辱感。其他人反对这项研究,因为他们担心研究结果会被用来歧视
反对SGM即使是现在,人们对SGM如何看待涉及遗传学的研究也知之甚少
以及性取向和性别认同(SOGI)数据,或者他们是否愿意参与此类
research.最近的一项研究报告说,在一个假设的环境中,
参加我们所有人的队列计划,而一项全面的审查引用了几项研究表明,
由于担心误解,SGM更不愿意参加基因组学研究。识别和
解决这些问题不仅对保护/代表SGM社区至关重要,而且对邀请
这些群体的参与,以确保他们获得精准医疗。
这个应用程序的首要目标是调查使用遗传和SOGI数据的研究前景
在一群不同的自我认同的SGM社区成员中。我们将采用定性方法,
检查以下两个目标:1)识别和理解有关研究的观点范围,
遗传和SOGI数据,包括对进行研究的个人的风险、危害和益处的看法
与健康问题以及与性取向和性别认同有关的生物因素;
2)描述SGM对使用SOGI数据进行遗传研究的适当性的态度和意见
以及他们希望解决的问题和他们在参与之前需要的保障措施
research.该项目将使我们能够改进在其他地点使用的策略,以提高我们的
研究结果,并建立一个强大的证据基础,以制定道德上可接受的研究方案,
确定并解决影响特殊女性的健康差距。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
数据更新时间:{{ journalArticles.updateTime }}
{{
item.title }}
{{ item.translation_title }}
- DOI:
{{ item.doi }} - 发表时间:
{{ item.publish_year }} - 期刊:
- 影响因子:{{ item.factor }}
- 作者:
{{ item.authors }} - 通讯作者:
{{ item.author }}
数据更新时间:{{ journalArticles.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ monograph.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ sciAawards.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ conferencePapers.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ patent.updateTime }}
ELLEN WRIGHT CLAYTON其他文献
ELLEN WRIGHT CLAYTON的其他文献
{{
item.title }}
{{ item.translation_title }}
- DOI:
{{ item.doi }} - 发表时间:
{{ item.publish_year }} - 期刊:
- 影响因子:{{ item.factor }}
- 作者:
{{ item.authors }} - 通讯作者:
{{ item.author }}
{{ truncateString('ELLEN WRIGHT CLAYTON', 18)}}的其他基金
Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM
性少数群体的遗传隐私和身份:GetPrISM
- 批准号:
9803955 - 财政年份:2019
- 资助金额:
$ 21.25万 - 项目类别:
LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application
LawSeq:为基因组学临床应用奠定良好的法律基础
- 批准号:
9104777 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Genetic Privacy and Identity in Community Settings - GetPreCiSe
社区环境中的遗传隐私和身份 - GetPreCiSe
- 批准号:
10436969 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Genetic Privacy and Identity in Community Settings - GetPreCiSe
社区环境中的遗传隐私和身份 - GetPreCiSe
- 批准号:
9274368 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Genetic Privacy and Identity in Community Settings - GetPreCiSe
社区环境中的遗传隐私和身份 - GetPreCiSe
- 批准号:
9982627 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Genetic Privacy and Identity in Community Settings - GetPreCiSe
社区环境中的遗传隐私和身份 - GetPreCiSe
- 批准号:
10675441 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Genetic Privacy and Identity in Community Settings - GetPreCiSe
社区环境中的遗传隐私和身份 - GetPreCiSe
- 批准号:
10256016 - 财政年份:2016
- 资助金额:
$ 21.25万 - 项目类别:
Returning Research Results of Pediatric Genomic Research to Participants
将儿科基因组研究的研究结果返回给参与者
- 批准号:
8240780 - 财政年份:2011
- 资助金额:
$ 21.25万 - 项目类别:
Returning Research Results of Pediatric Genomic Research to Participants
将儿科基因组研究的研究结果返回给参与者
- 批准号:
8337379 - 财政年份:2011
- 资助金额:
$ 21.25万 - 项目类别:
Religion and Genomics: Navigating Pathways and Perspectives of Patient Care
宗教与基因组学:患者护理的路径和视角
- 批准号:
7484855 - 财政年份:2008
- 资助金额:
$ 21.25万 - 项目类别:
相似海外基金
Rational design of rapidly translatable, highly antigenic and novel recombinant immunogens to address deficiencies of current snakebite treatments
合理设计可快速翻译、高抗原性和新型重组免疫原,以解决当前蛇咬伤治疗的缺陷
- 批准号:
MR/S03398X/2 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Fellowship
Re-thinking drug nanocrystals as highly loaded vectors to address key unmet therapeutic challenges
重新思考药物纳米晶体作为高负载载体以解决关键的未满足的治疗挑战
- 批准号:
EP/Y001486/1 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Research Grant
CAREER: FEAST (Food Ecosystems And circularity for Sustainable Transformation) framework to address Hidden Hunger
职业:FEAST(食品生态系统和可持续转型循环)框架解决隐性饥饿
- 批准号:
2338423 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Continuing Grant
Metrology to address ion suppression in multimodal mass spectrometry imaging with application in oncology
计量学解决多模态质谱成像中的离子抑制问题及其在肿瘤学中的应用
- 批准号:
MR/X03657X/1 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Fellowship
CRII: SHF: A Novel Address Translation Architecture for Virtualized Clouds
CRII:SHF:一种用于虚拟化云的新型地址转换架构
- 批准号:
2348066 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Standard Grant
The Abundance Project: Enhancing Cultural & Green Inclusion in Social Prescribing in Southwest London to Address Ethnic Inequalities in Mental Health
丰富项目:增强文化
- 批准号:
AH/Z505481/1 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Research Grant
ERAMET - Ecosystem for rapid adoption of modelling and simulation METhods to address regulatory needs in the development of orphan and paediatric medicines
ERAMET - 快速采用建模和模拟方法的生态系统,以满足孤儿药和儿科药物开发中的监管需求
- 批准号:
10107647 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
EU-Funded
BIORETS: Convergence Research Experiences for Teachers in Synthetic and Systems Biology to Address Challenges in Food, Health, Energy, and Environment
BIORETS:合成和系统生物学教师的融合研究经验,以应对食品、健康、能源和环境方面的挑战
- 批准号:
2341402 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Standard Grant
Ecosystem for rapid adoption of modelling and simulation METhods to address regulatory needs in the development of orphan and paediatric medicines
快速采用建模和模拟方法的生态系统,以满足孤儿药和儿科药物开发中的监管需求
- 批准号:
10106221 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
EU-Funded
Recite: Building Research by Communities to Address Inequities through Expression
背诵:社区开展研究,通过表达解决不平等问题
- 批准号:
AH/Z505341/1 - 财政年份:2024
- 资助金额:
$ 21.25万 - 项目类别:
Research Grant