Table 1

Typology of ethical themes
Theme Description
Welfare of Vulnerable, Sanctity of Person (Welfare) Focus on possible mistreatment, exploitation of African Americans, other minority groups; low-income groups, veterans or soldiers, children, elderly, sick, and/or concerns over defining the body as an object, product, commodity, subject rather than a person.
Informed Consent (Consent) Focus on notification/education of patient/donor. Discussion of lack of consent, or merits/weaknesses of different consent models such as specific consent, broad consent, or presumed/opt-out consent.
Compensation, Benefit, Profit Sharing (Compensation) Focus on benefits to patient/donor including treatment, pay, or profit sharing; includes discussion of fairness and balance between financial benefits to patient and profits made by scientists and industry.
Privacy, Discrimination, Sharing Results (Privacy) Focus on protecting privacy and/or use of information to discriminate, and/or conditions under which patient/donor should be notified of research result; ability of patient to express consent/desire to be contacted; possible harm or benefit to patient or donor.
Patient Control, Data Access, Patenting (Control) Focus on patient/donor’s ability to control research applications or uses; i.e. ability to withdraw specimen from biobank or database; and/or researcher access and sharing of data; and/or discussion of patenting of specific therapies and diagnostic tools.
Accountability, Regulation, Oversight (Accountability/Oversight) Focus on nature or absence of regulatory rules, oversight of public and private biobanks, management of tissue/DNA storage and use; and/or ability of patient/donor or third parties to seek regulatory or legal action.
Scientific, Societal Progress (Progress) Focus on need for tissue/DNA donations and banking for scientific and social progress; emphasis on benefits of progress outweighing concerns over informed consent and other possible ethical issues.
Public Education, Consultation (Education) Focus on need for government, experts, and institutions to educate the public about issues and/or focus on need for direct public consultation and public/stakeholder involvement in decision-making. Includes general reference to public opinion or beliefs.
Advocacy, Activism (Advocacy) Focus on call for action for “tissue rights movement,” and direct advocacy on the part of public and social groups to challenge the status quo and to seek policies more in line with the public interest and/or to shift away from culture of commercialization etc.

Nisbet and Fahy

Nisbet and Fahy BMC Medical Ethics 2013 14:10   doi:10.1186/1472-6939-14-10

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