Supplement to Framework for Advances in Reprogenomics Ethics & Regulation (FAIRER)
生殖基因组学伦理进展框架的补充
基本信息
- 批准号:10593247
- 负责人:
- 金额:$ 15.12万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2021
- 资助国家:美国
- 起止时间:2021-06-01 至 2024-03-31
- 项目状态:已结题
- 来源:
- 关键词:AddressAdministrative SupplementAdvocateAreaAssisted Reproductive TechnologyBioethicsBioethics ConsultantsBiomedical ResearchChildClinicalClinical ResearchClinical TrialsConduct Clinical TrialsData CollectionDevelopmentEnsureEthical IssuesEthicsFamilyFeedbackFocus GroupsFundingFutureGeneticGenomicsHealthHealth Care ResearchHealthcareHeterosexualsHumanHuman GenomeIndividualInstitutional Review BoardsInterventionInterviewLiteratureMedicalModificationMotivationOutputParentsParticipantPatientsPersonal SatisfactionPersonsPhysiologicalPolicy MakerPopulation HeterogeneityPregnancyPrivacyQualitative MethodsRegulationReproductionReproductive MedicineReproductive SciencesResearchResearch EthicsResearch MethodologyResearch PersonnelReview LiteratureSafetyScienceScientistSexual DevelopmentSocial SciencesSocietiesStructureTrustUnderrepresented PopulationsWorkcisgendercommunity based researchdesignepigenomeexperiencegender minoritygender minority communitygender minority groupgender minority healthinsightinterestmeetingsmembermicrobiomeminority healthcareoffspringparent projectpregnantreproductivesexual minoritysexual minority groupsocialsocial exclusionsocial movementtransgendertrial design
项目摘要
ABSTRACT
The FAIRER study is designed to develop a framework for the ethical conduct of clinical trials of reproductive
genomic interventions, particularly focusing on the research participation of pregnancy-capable individuals.
This supplement to the FAIRER study will address unique ethical and social issues in trials involving research
participants from sexual and/or gender minorities (SGM). The motivations and considerations of SGM
regarding reproductive genomic interventions, while sharing common features with those of cisgender and
heterosexual participants, likely also differ in significant ways. Physiological, genetic, and social differences
between cisgender participants, transgender participants, and those with differences of sexual development
(DSD) may necessitate changes in trial design and safety considerations. Finally, SGM have historically
experienced marginalization in medical settings, particularly with respect to access to and utilization of assisted
reproductive technologies, that impact trust relationships in biomedical research. In order to build an ethical
framework that considers the needs and interests of all potential participants in reprogenomics clinical trials,
this project has the following Aims: (1) Incorporate considerations unique to individuals identifying as sexual
and/or gender minorities (SGM) into an ethical framework for reprogenomics research, with emphasis on the
health and well-being of pregnant and potentially pregnant participants and their future offspring; and (2) Build
the perspectives and expertise of SGM individuals and experts in SGM healthcare and research into our
ethical framework and the stakeholder-informed toolkit to guide IRBs and researchers engaged with
reprogenomics. To accomplish these Aims, we will conduct a scoping review of literature on SGM
considerations in family-building; interview professionals with expertise in SGM health to draft an ethical
framework that addresses issues relevant to SGM clinical participation; and conduct two focus groups with
individuals from SGM communities to discuss and receive feedback on the draft framework. These strategies
will enhance our larger project and increase the relevance of its results and deliverables to all stakeholders
who may be involved in future human research in reprogenomics.
摘要
FAIRER研究旨在为生殖健康临床试验的伦理行为制定一个框架,
基因组干预措施,特别注重有怀孕能力的个人参与研究。
FAIRER研究的补充将解决涉及研究的试验中的独特伦理和社会问题
性和/或性别少数群体(SGM)。SGM的动机和考虑
关于生殖基因组干预,同时与顺性别和
异性恋的参与者,可能也有很大的不同。生理、遗传和社会差异
在顺性别参与者、跨性别参与者和性发育差异者之间
(DSD)可能需要改变试验设计和安全性考虑。最后,SGM在历史上
在医疗环境中经历边缘化,特别是在获得和利用援助方面,
生殖技术,影响生物医学研究中的信任关系。为了建立一个道德的
该框架考虑了再生组学临床试验中所有潜在参与者的需求和利益,
这个项目有以下目标:(1)纳入对性取向的个人的独特考虑
和/或性别少数群体(SGM)纳入生殖组学研究的伦理框架,重点是
怀孕和潜在怀孕的参与者及其未来后代的健康和福祉;以及(2)建立
SGM个人和SGM医疗保健专家的观点和专业知识,以及对我们
伦理框架和知情的工具包,以指导IRB和研究人员参与
再生组学为了实现这些目标,我们将对SGM的文献进行范围审查
家庭建设中的考虑因素;采访具有SGM健康专业知识的专业人士,
解决SGM临床参与相关问题的框架;并开展两个焦点小组,
来自SGM社区的个人讨论框架草案并听取反馈意见。这些策略
将加强我们的大型项目,并提高其成果和交付成果与所有利益相关者的相关性
他可能会参与未来人类的再生组学研究。
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)
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Ruth Farrell其他文献
Ruth Farrell的其他文献
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{{ truncateString('Ruth Farrell', 18)}}的其他基金
Framework for Advances in Reprogenomics Ethics & Regulation (FAIRER)
生殖基因组学伦理进展框架
- 批准号:
10408663 - 财政年份:2021
- 资助金额:
$ 15.12万 - 项目类别:
Framework for Advances in Reprogenomics Ethics & Regulation (FAIRER)
生殖基因组学伦理进展框架
- 批准号:
10596652 - 财政年份:2021
- 资助金额:
$ 15.12万 - 项目类别:
Admin. Supplement to: Ensuring Patients' Informed Access to Noninvasive Prenatal Testing
行政。
- 批准号:
10165356 - 财政年份:2017
- 资助金额:
$ 15.12万 - 项目类别:
Ensuring Patients' Informed Access to Noninvasive Prenatal Testing
确保患者知情地获得无创产前检测
- 批准号:
9751355 - 财政年份:2017
- 资助金额:
$ 15.12万 - 项目类别:
Engaging Patients in Prenatal Genetic Testing Decisions as a Pathway to Improve Obstetric Outcomes
让患者参与产前基因检测决策作为改善产科结果的途径
- 批准号:
10658430 - 财政年份:2017
- 资助金额:
$ 15.12万 - 项目类别:
Preparing for Emerging Applications of Noninvasive Prenatal Testing
为无创产前检测的新兴应用做好准备
- 批准号:
8871291 - 财政年份:2015
- 资助金额:
$ 15.12万 - 项目类别:
Patient perceptions of bioengineered probiotics and clinical metagenomics
患者对生物工程益生菌和临床宏基因组学的看法
- 批准号:
7908705 - 财政年份:2008
- 资助金额:
$ 15.12万 - 项目类别:
Patient perceptions of bioengineered probiotics and clinical metagenomics
患者对生物工程益生菌和临床宏基因组学的看法
- 批准号:
7572423 - 财政年份:2008
- 资助金额:
$ 15.12万 - 项目类别:
Patient perceptions of bioengineered probiotics and clinical metagenomics
患者对生物工程益生菌和临床宏基因组学的看法
- 批准号:
7690965 - 财政年份:2008
- 资助金额:
$ 15.12万 - 项目类别:
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