Home Ethical Issues Informed Consent Patient Refusal

Why would individuals refuse?

In our research, the majority of people approached for donation favored consent over refusal. In our research and in the Jack and Womack study [Alison L. Jack and Christopher Womak, "Why surgical patients do not donate tissue for commercial research: review of records," (BMJ Vol. 327 August 2, 2003: 262)], donors appreciate the opportunity to participate in research that might benefit others. This should not diminish the validity of refusal decisions. There are several reasons why a person might refuse consent for donating extra excised tissue to a commercial research repository. Jack and Womack cite the following reasons for refusal:

• hostile patients
• skeptical of commercial research
• uncomfortable about donating tissue
• not fully understanding the issues because of culture/language
• perceived lack of time to make a decision
• fear it would compromise the diagnosis
• objection to disclosure of medical history
• fear the surgeon would take extra tissue
• fear that anonymity would not be upheld
• spiritual reasons
• emotional attachment to organ to be removed
• too depressed to make a decision
• undecided and so encouraged to decline

In addition, some people might refuse for moral reasons, for instance if they did not want their tissue used for research (e.g., behavior genetics, genetic enhancement, stem cell research) they morally oppose.