Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.

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  • Additional Information
    • Subject Terms:
    • Subject Terms:
    • Abstract:
      Dynamic Consent (DC) is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people (First Peoples of Australia). In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining (or redefining) DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation.
    • Journal Subset:
      Biomedical; Peer Reviewed; USA
    • ISSN:
      1073-1105
    • MEDLINE Info:
      NLM UID: 9315583
    • Publication Date:
      20200518
    • Publication Date:
      20200526
    • DOI:
      http://dx.doi.org/10.1177/1073110520917012
    • Accession Number:
      143194907
  • Citations
    • ABNT:
      PRICTOR, M. et al. Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making. Journal of Law, Medicine & Ethics, [s. l.], v. 48, n. 1, p. 205–217, 2020. DOI 10.1177/1073110520917012. Disponível em: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=143194907. Acesso em: 10 ago. 2020.
    • AMA:
      Prictor M, Huebner S, Teare HJA, et al. Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making. Journal of Law, Medicine & Ethics. 2020;48(1):205-217. doi:10.1177/1073110520917012
    • APA:
      Prictor, M., Huebner, S., Teare, H. J. A., Burchill, L., Kaye, J., Wolf, S. M., Clayton, E. W., & Lawrenz, F. (2020). Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making. Journal of Law, Medicine & Ethics, 48(1), 205–217. https://doi.org/10.1177/1073110520917012
    • Chicago/Turabian: Author-Date:
      Prictor, Megan, Sharon Huebner, Harriet J.A. Teare, Luke Burchill, Jane Kaye, Susan M. Wolf, Ellen Wright Clayton, and Frances Lawrenz. 2020. “Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.” Journal of Law, Medicine & Ethics 48 (1): 205–17. doi:10.1177/1073110520917012.
    • Harvard:
      Prictor, M. et al. (2020) ‘Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making’, Journal of Law, Medicine & Ethics, 48(1), pp. 205–217. doi: 10.1177/1073110520917012.
    • Harvard: Australian:
      Prictor, M, Huebner, S, Teare, HJA, Burchill, L, Kaye, J, Wolf, SM, Clayton, EW & Lawrenz, F 2020, ‘Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making’, Journal of Law, Medicine & Ethics, vol. 48, no. 1, pp. 205–217, viewed 10 August 2020, .
    • MLA:
      Prictor, Megan, et al. “Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.” Journal of Law, Medicine & Ethics, vol. 48, no. 1, Mar. 2020, pp. 205–217. EBSCOhost, doi:10.1177/1073110520917012.
    • Chicago/Turabian: Humanities:
      Prictor, Megan, Sharon Huebner, Harriet J.A. Teare, Luke Burchill, Jane Kaye, Susan M. Wolf, Ellen Wright Clayton, and Frances Lawrenz. “Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.” Journal of Law, Medicine & Ethics 48, no. 1 (March 2020): 205–17. doi:10.1177/1073110520917012.
    • Vancouver/ICMJE:
      Prictor M, Huebner S, Teare HJA, Burchill L, Kaye J, Wolf SM, et al. Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making. Journal of Law, Medicine & Ethics [Internet]. 2020 Mar [cited 2020 Aug 10];48(1):205–17. Available from: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=143194907