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3 results

  • Investigator and participant expectations for returning non-genetic results: insights from the Rare and Atypical Diabetes Network (RADIANT) study

  • Forough Noohi, Manu S. Sundaresan, Rochelle N. Naylor, Lainie Friedman Ross
  • Journal:
    Journal of Clinical and Translational Science / Volume 7 / Issue 1 / 2023
    Published online by Cambridge University Press:
    22 November 2023, e260
    • Article
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  • Objectives/Goals:

    The Rare and Atypical DIAbetes NeTwork (RADIANT) aims to discover the underlying pathoetiology of atypical diabetes by conducting both genotyping and non-genetic deep phenotyping. While the return of genetic test results in research settings has been investigated, the return of non-genetic results (RoR-NG) has received less attention. We explore the RoR-NG with RADIANT investigators and participants.

    Methods/Study Population:

    We conducted one-on-one interviews with 10 adult RADIANT participants and 10 RADIANT investigators. Participants also completed two health literacy screening tools and a survey on perspectives regarding return of results (RoR). Investigators completed one survey on experience and confidence in explaining clinical tests utilized in the RADIANT study and another survey on perspectives regarding RoR.

    Results:

    Most participants were non-Hispanic White. All participants had high scores on health literacy screens. Both RADIANT participants and investigators expressed strong support for RoR-NG. RADIANT participants and investigators acknowledged the different roles and responsibilities between research and clinical care for interpreting and acting on non-genetic results. However, the lines between clinical care and research in returning and acting on results were often blurred by both participants and investigators.

    Discussion/Significance:

    Our study provides important insight into how both investigators and participants simultaneously distinguish and blur clinical and research roles and responsibilities when discussing non-genetic research results and the return of these results. Further study should engage individuals from diverse racial and ethnic backgrounds and with varying levels of health literacy to understand how best to support all participants when returning research results.

  • 4 - The Evolution of Consumer Genetic Testing Services from Oncormed, Inc. to 23andMe Holding Co.

  • Michael J. Malinowski, Louisiana State University
  • Book:
    Personal Genome Medicine
    Published online:
    30 August 2023
    Print publication:
    31 August 2023, pp 158-201

  • Summary

    In the years following FDA approval of direct-to-consumer, genetic-health-risk/DTCGHR testing, millions of people in the US have sent their DNA to companies to receive personal genome health risk information without physician or other learned medical professional involvement. In Personal Genome Medicine, Michael J. Malinowski examines the ethical, legal, and social implications of this development. Drawing from the past and present of medicine in the US, Malinowski applies law, policy, public and private sector practices, and governing norms to analyze the commercial personal genome sequencing and testing sectors and to assess their impact on the future of US medicine. Written in relatable and accessible language, the book also proposes regulatory reforms for government and medical professionals that will enable technological advancements while maintaining personal and public health standards.

  • Cultures of Marriage, Reproduction and Genetic Testing in Japan

  • Masae Kato, Margaret Sleeboom-Faulkner
  • Journal:
    BioSocieties / Volume 4 / Issue 2-3 / September 2009
    Published online by Cambridge University Press:
    01 September 2009, pp. 115-127
    Print publication:
    September 2009

  • This article discusses how cultural concepts of marriage and reproduction play a primary role in how genetic disorders are regarded in Japan. The article examines the anxieties that accompany the taking of genetic tests in the context of Japanese cultural concepts of family, care and genetic disorders. The analysis draws on data from two studies conducted over two years (2006–2008), based on semi-structured interviews with individuals affected by a genetic disorder, and a study of prenatal decision-making as regards the taking of tests during pregnancy, which also involved interviews with medical professionals, including certified clinical geneticists, genetic counsellors and scholars. A number of studies, as well as governmental documents, have emphasized the importance of respecting culture in dealing with a genetic disorder and genetic information. Though we regard respect for culture as important, we show that respect for culture might hide superstitions and culturally embedded prejudices about genetic disorders. We show this by analysing the given motivations of couples for taking a genetic test and by tracing the ways in which ‘genetic information’ is understood in a socio-cultural context.