Returning Incidental Findings to Study Participants in Genomic Research: A Discussion of the Ethical Aspects

被引:0
作者
Dugaesescu, Monica [1 ,2 ]
Badita, Violeta-Ionela [3 ]
Poenaru, Elena [4 ]
机构
[1] Univ Bucharest, Fac Biol, Bucharest, Romania
[2] IC Fundeni, Clin Lab, Fundeni Clin Inst, Bucharest, Romania
[3] Mina Minov Natl Inst Legal Med, Bucharest, Romania
[4] Carol Davila Univ Med & Pharm, Fac Med, Bucharest, Romania
来源
ADVANCES IN DIGITAL HEALTH AND MEDICAL BIOENGINEERING, VOL 2, EHB-2023 | 2024年 / 110卷
关键词
Incidental Finding; Genomic Research; Genetic Risk; Genomic Data; Ethics;
D O I
10.1007/978-3-031-62520-6_71
中图分类号
TP39 [计算机的应用];
学科分类号
081203 ; 0835 ;
摘要
Nowadays, the capacity to generate genetic data is enormous, genotyping and sequencing platforms being more and more accessible. Each genome contains various information about one's health and disease risk. Understanding the significance of genetic variance and its impact requires large genomic studies, involving analyzing the genetic data of millions of individuals. However, it is complicated to foresee what would reveal the analysis of each person's genetic data at the beginning of the study. Considering this context, this paper addresses the issue of returning incidental findings to study participants in genomic research, with a focus on the ethical aspects and the clinical consequences of revealing the result to the sample donor. Deciding whether to return incidental findings or not to study participants is a complex issue. All stakeholders (sample donors, researchers and clinicians) are open to revealing incidental findings, but the decision depends on the clinical impact of a variant and its actionability. The content of the informed consent must be adapted to dealing with genomic data and incidental findings when enrolling study participants. Sample donor's wishes, expressed in the informed consent, ethical aspects and clinical relevance of the variant must be integrated to decide whether a specific incidental finding should be reported.
引用
收藏
页码:636 / 643
页数:8
相关论文
共 15 条
  • [1] To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research
    AlFayyad, Isamme
    Al-Tannir, Mohamad
    Abu-Shaheen, Amani
    AlGhamdi, Saleh
    [J]. BMC MEDICAL ETHICS, 2021, 22 (01)
  • [2] Informed consent for return of incidental findings in genomic research
    Appelbaum, Paul S.
    Waldman, Cameron R.
    Fyer, Abby
    Klitzman, Robert
    Parens, Erik
    Martinez, Josue
    Price, W. Nicholson, II
    Chung, Wendy K.
    [J]. GENETICS IN MEDICINE, 2014, 16 (05) : 367 - 373
  • [3] Bioethics in Iceland Recent Developments
    Arnason, Vilhjalmur
    [J]. CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS, 2016, 25 (03) : 421 - 434
  • [4] The ethical use of existing samples for genome research
    Bathe, Oliver F.
    McGuire, Amy L.
    [J]. GENETICS IN MEDICINE, 2009, 11 (10) : 712 - 715
  • [5] Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings
    Boardman, Felicity
    Hale, Rachel
    [J]. MOLECULAR GENETICS & GENOMIC MEDICINE, 2018, 6 (06): : 1079 - 1096
  • [6] The development of large-scale de-identified biomedical databases in the age of genomics-principles and challenges
    Dankar, Fida K.
    Ptitsyn, Andrey
    Dankar, Samar K.
    [J]. HUMAN GENOMICS, 2018, 12
  • [7] Recommendations for reporting results of diagnostic genomic testing
    Deans, Zandra C.
    Ahn, Joo Wook
    Carreira, Isabel M.
    Dequeker, Elisabeth
    Henderson, Mick
    Lovrecic, Luca
    Ounap, Katrin
    Tabiner, Melody
    Treacy, Rebecca
    van Asperen, Christi J.
    [J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2022, 30 (09) : 1011 - 1016
  • [8] ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing
    Green, Robert C.
    Berg, Jonathan S.
    Grody, Wayne W.
    Kalia, Sarah S.
    Korf, Bruce R.
    Martin, Christa L.
    McGuire, Amy L.
    Nussbaum, Robert L.
    O'Daniel, Julianne M.
    Ormond, Kelly E.
    Rehm, Heidi L.
    Watson, Michael S.
    Williams, Marc S.
    Biesecker, Leslie G.
    [J]. GENETICS IN MEDICINE, 2013, 15 (07) : 565 - 574
  • [9] Ethical issues in the use of leftover samples and associated personal data obtained from diagnostic laboratories
    Lenicov, Federico Remes
    Fink, Nilda E.
    [J]. CLINICA CHIMICA ACTA, 2023, 548
  • [10] Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment
    Regier, Dean A.
    Peacock, Stuart J.
    Pataky, Reka
    van der Hoek, Kimberly
    Jarvik, Gail P.
    Hoch, Jeffrey
    Veenstra, David
    [J]. CANADIAN MEDICAL ASSOCIATION JOURNAL, 2015, 187 (06) : E190 - E197