Identifying strategies to reveal genetic results over the lifespan
确定揭示一生中遗传结果的策略
基本信息
- 批准号:10739918
- 负责人:
- 金额:$ 17.98万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2023
- 资助国家:美国
- 起止时间:2023-09-01 至 2025-08-31
- 项目状态:未结题
- 来源:
- 关键词:AddressAdoptionAdultAgeAttitudeBirthChildChildhoodClinicalClinical ResearchClinical TrialsComplexConsensusConsentDataDecision MakingDevelopmentEducational workshopEnrollmentEnsureEquilibriumEquityEthicsFutureGene TargetingGeneticGenetic DiseasesGenetic ScreeningGenomeGenomic medicineGenomicsGoalsGovernmentHealthHealth PersonnelHealthcareIndividualIndustryInterviewLaboratoriesLegal ObligationsLongevityMedicalMentorsMentorshipMethodologyMethodsNational Human Genome Research InstituteNewborn InfantParentsPediatric OncologistPoliciesPopulationPrivacyProcessProviderRecommendationRegistriesReportingResearchResearch PersonnelResearch Project GrantsResourcesRiskScienceSeriesSpecific qualifier valueStructureSurveysTechnologyTestingTimeTrainingUnited States National Institutes of HealthVisionWorkcareercohortdesignethical, legal, and social implicationevidence basegenetic counselorgenetic informationgenetic testinglegal implicationmembernovelpreferenceprimary care providerresearch clinical testingscreening panelskillssocial implicationstudy populationtargeted treatment
项目摘要
PROJECT SUMMARY/ABSTRACT
The widespread sequencing of healthy babies is imminent: at least a dozen research projects have recently
launched, and several companies offer newborn genetic screening panels. A newborn’s genome can contain
health information of relevance across their lifespan — as a baby, later in childhood, and in adulthood. This
poses a timing issue: if babies are sequenced near birth, when should this information be revealed? A
proposed vision for the future of genomic medicine is to reveal information as it becomes relevant, to the
child’s parents and later, if desired, to the individual. This would necessitate the genome being kept “on file,” to
be used as a resource over time. This strategy may promote the ethical rollout of lifelong genomic medicine by
promoting the developing child’s autonomy and optimizing the balance of benefits to risks. However, the
feasibility of this strategy, the details of its implementation, and its implications have yet to be explored in a
rigorous and empirical manner. Perhaps other approaches are preferable. A second, simplified, strategy would
reveal all childhood-relevant information at birth and then give the individual the option of receiving adult-onset
information at age 18. A third strategy would reject using the genome as a resource over time, and just
generate one report for a baby, potentially including adult-onset information. This strategy may be preferable
because the use of the genome as a resource raises complex ethical, legal, and social implications (ELSI),
including data control, privacy, consent, legal obligations, and decision making about when information
becomes relevant. For these different strategies, this project will 1) Determine their feasibility, 2) Assess their
ELSI, 3) Understand the preferences of parents from diverse backgrounds, and 4) Develop consensus on the
necessary and desirable features for a strategy to sequence babies near birth, possibly using the genome as a
resource over time. The project will have impact by producing concrete, evidence-based and ethically framed
recommendations for implementers of newborn sequencing. The candidate was originally trained as a
computational biologist, was formerly employed in the genomics industry, and is currently an ELSI scholar. Her
goal is to become an independent investigator working in the context of clinical research informing the adoption
of genomic medicine to identify, assess and address ELSI questions, ultimately to ensure that genomic
medicine works to the benefit of all. To accomplish this goal, this proposal focuses her training efforts on a)
developing skills in conducting surveys, b) developing expertise in Delphi methods, and c) refining skills in
conceptual and normative analysis. The project will leverage the BabySeq cohorts, the world’s first empirical
studies of comprehensive genomic sequencing in healthy newborns, directed by members of her mentorship
team. The proposed training will make the candidate a well-rounded ELSI researcher able to deploy mixed
methodologies while leveraging her technical background, preparing her to contribute to NHGRI’s goal of
developing and assessing strategies for implementing the use of genomic information at the population level.
项目总结/文摘
项目成果
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