Consent to Donate Surgical Biospecimens for Research Perceptions of People With Colorectal Cancer

被引:8
|
作者
Williams, Anne Marjorie [1 ,2 ,8 ]
Allen, Judy [3 ]
Zeps, Nikolajs [7 ]
Pienaar, Catherine [2 ]
Bulsara, Caroline [1 ,2 ,4 ,6 ]
Monterosso, Leanne [2 ,5 ,7 ]
机构
[1] Murdoch Univ, Sch Hlth Profess, Perth, WA, Australia
[2] Edith Cowan Univ, Sch Nursing & Midwifery, Joondalup, WA, Australia
[3] Univ Western Australia, Fac Law, Perth, WA 6009, Australia
[4] Univ Notre Dame, Sch Nursing & Midwifery, Fremantle, WA, Australia
[5] Univ Notre Dame, Fremantle, WA, Australia
[6] Curtin Univ, Bentley, WA, Australia
[7] St John God Healthcare, Perth, WA, Australia
[8] Sir Charles Gairdner Hosp, Perth, WA, Australia
关键词
Biobanks; Biospecimens; Cancer; Consent; Donation; Ethics; Genetic; Law; Psychological; Research; INFORMED-CONSENT; PSYCHOLOGICAL DISTRESS; BIOLOGICAL SAMPLES; GENETIC RESEARCH; HUMAN BIOBANKS; TISSUE; SOCIETY; STORAGE; SCIENCE; ETHICS;
D O I
10.1097/NCC.0000000000000274
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background: Biospecimens for cancer research are commonly sought from people who undergo surgery for a new diagnosis of cancer, and the demand for these biospecimens is increasing. Objective: The objective of this study was to explore the perceptions of people with colorectal cancer regarding the impact of an opt-in model of consent for biospecimen donation. Methods: The qualitative method of Grounded Theory was used, and data were gathered through digitally recorded semistructured interviews with 18 participants. Data were analyzed using the constant comparative method to the descriptive level. Results: Four major categories were identified describing the response to the consent process used for donating tissue for research purposes. These were as follows: consent is "no big deal" compared with the diagnosis of cancer; helping others; trusting the surgeon; and information related to donation of biospecimens. Conclusions: Results from this study indicate that the achievement of ideal informed and voluntary consent is difficult when patients are confronted with the trauma of newly diagnosed illness. Innovative approaches are implicated to obtain consent while protecting the autonomy and dignity of patients. Implications for Practice: The results from this study can contribute to further development of processes for the donation of biospecimens for research purposes that respect the needs and views of patients.
引用
收藏
页码:221 / 227
页数:7
相关论文
共 50 条
  • [1] People with aphasia: capacity to consent, research participation and intervention inequalities
    Brady, Marian C.
    Fredrick, Alex
    Williams, Brian
    INTERNATIONAL JOURNAL OF STROKE, 2013, 8 (03) : 193 - 196
  • [2] Willingness of a Multiethnic Immigrant Population to Donate Biospecimens for Research Purposes
    Raines-Milenkov, Amy
    Felini, Martha
    Baker, Eva
    Acharya, Rushil
    Diese, Elvis Longanga
    Onsa, Sara
    Iang, Hlawn
    Abdi, Anab
    Akpan, Idara
    Hussain, Arbaz
    Wagner, Teresa
    Hughes, Jonathan
    JOURNAL OF IMMIGRANT AND MINORITY HEALTH, 2022, 24 (03) : 705 - 712
  • [3] Informed Consent, Biobank Research, and Locality: Perceptions of Breast Cancer Patients in Three European Countries
    Petersen, Imme
    Desmedt, Christine
    Harris, Adrian
    Buffa, Francesca
    Kollek, Regine
    JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS, 2014, 9 (03) : 48 - 55
  • [4] Biospecimens, Research Consent, and Distinguishing Cell Line Research
    Spector-Bagdady, Kayte
    Lynch, Holly Fernandez
    Brenner, J. Chad
    Shuman, Andrew G.
    JAMA ONCOLOGY, 2019, 5 (03) : 406 - 410
  • [5] Use of human surplus biospecimens in research: a survey from a cancer centre
    Al-Hussaini, M.
    Abu-Hmaidan, A.
    EASTERN MEDITERRANEAN HEALTH JOURNAL, 2014, 20 (06) : 378 - 384
  • [6] Research ethics in people with diminished mental capacity: Informed Consent
    Anguita Mackay, Veronica
    REVISTA CHILENA DE NEUROPSICOLOGIA, 2010, 5 (01): : 31 - 37
  • [7] Informed Consent to Donate Embryos for Research Purposes
    Nelson, Erin
    Mykitiuk, Roxanne
    Nisker, Jeff
    Christilaw, Jan
    Corey, Julie Anne
    Heaman, Maureen
    Lippman, Abby
    Rodgers, Sanda
    Shapiro, Jodi
    Sherwin, Susan
    JOURNAL OF OBSTETRICS AND GYNAECOLOGY CANADA, 2008, 30 (09) : 824 - 829
  • [8] Obtaining consent from young people with autism to participate in research
    Loyd, Daisy
    BRITISH JOURNAL OF LEARNING DISABILITIES, 2013, 41 (02) : 133 - 140
  • [9] Questioning the informed consent for conservation and research use of human biospecimens
    Despres, Caroline
    Mamzer, Marie-France
    BULLETIN DU CANCER, 2022, 109 (09) : 948 - 959
  • [10] Alaska Native people's perceptions, understandings, and expectations for research involving biological specimens
    Hiratsuka, Vanessa Y.
    Brown, Jennifer K.
    Hoeft, Theresa J.
    Dillard, Denise A.
    INTERNATIONAL JOURNAL OF CIRCUMPOLAR HEALTH, 2012, 71