RESUMEN
Genomic databases support research intended to advance understanding, diagnosis, and treatment of disease. Utility is linked to diversity, and initiatives are seeking to enroll traditionally underrepresented groups such as people with disabilities. Commentators have called for adoption of a participant-centric approach to build trust and address barriers to inclusion. Complexities emerge, however, when minors are enrolled and whose perspective on their condition may with time diverge from their parents' perspective. Public response to MSSNG, a genomic database focused on autism, and public discourse regarding neurodiversity reveal division regarding autism as a difference or identity versus a disease. We explore what it means for genomic databases enrolling individuals, particularly minors, with disabilities to be participant-centric when affected individuals disagree about the nature of their condition and research priorities, offering recommendations for participant engagement and measures when enrolling minors with conditions that are the subject of difference-disease debates.
Asunto(s)
Trastorno Autístico , Personas con Discapacidad , Genómica , Humanos , PadresRESUMEN
Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
Asunto(s)
Confidencialidad , Bases de Datos Genéticas/ética , Difusión de la Información/ética , Consentimiento Informado , Humanos , Participación del PacienteRESUMEN
A 2011 National Academies of Sciences report called for an "Information Commons" and a "Knowledge Network" to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
Asunto(s)
Difusión de la Información , Tecnología de la Información/normas , Informática Médica/normas , Actitud , Humanos , National Academy of Sciences, U.S. , Participación de los Interesados/psicología , Estados UnidosRESUMEN
Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
Asunto(s)
Bases de Datos de Ácidos Nucleicos , Difusión de la Información/métodos , Investigación Biomédica/tendencias , HumanosRESUMEN
A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
Asunto(s)
Macrodatos , Participación de la Comunidad/psicología , Difusión de la Información/ética , Adulto , Investigación Biomédica , California , Femenino , Humanos , Masculino , Persona de Mediana Edad , North Carolina , TexasRESUMEN
Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
Asunto(s)
Participación de la Comunidad , Difusión de la Información , Informática Médica/normas , Participación de los Interesados , Humanos , ConfianzaRESUMEN
Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a "Medical Information Commons" (MIC). We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.
Asunto(s)
Tecnología Biomédica/normas , Difusión de la Información , Informática Médica/normas , Participación de los Interesados/psicología , Humanos , Formulación de PolíticasRESUMEN
National and international public-private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.