Imagine you are a patient walking into the hospital for an emergency appendectomy. You are in pain and frightened. Prior to seeing a physician, you provide your insurance coverage and sign the consent to treat form. Did you read it? Do you know exactly what it is you just consented to? For example, do you know what a chimera is or care if your DNA could potentially be used to create one?
Biobanking of genetic material has become a huge industry, with millions of biospecimens preserved in private and public repositories. Using this material, biobanks frequently conduct or facilitate research on the possible genetic origins of disease for the purpose of developing targeted treatments. While the wealth of genetic information gleaned from this research has led to medical advances and may lead to many more, using a patient's genetic material in research procedures incongruent with her or his personal beliefs may be inconsistent with the concept of respectful care.
Increasingly, permission to use biospecimens for research purposes is being built into consent to treat forms. Patients may or may not be given the choice to check an opt-out box. Even many broad research consent forms often provide little to no information to help a patient weigh her or his decision and rely on the patient's trust in the intentions of researchers or institutions that may use this genetic material.
Are such methods of consent consistent with the ethical value of respect for the patient's rights and values, especially when the patient is preoccupied with her or his medical condition and treatment? Is this really informed consent?
Nursing ethics and patient-centered care call for nurses to advocate for their patients and to honor the values of each individual for whom we provide health care. In a March 2006 letter in the Lancet Oncology, Maschke pointed out that the risks of "dignitary harms"-violation of one's deeply held personal beliefs-are often overlooked in biospecimen research. These risks include research activities that are in conflict with personal values or religious beliefs and may cause moral distress for donors. Examples might include cloning, the creation of chimeras-described by Jamie Shreeve in the New York Times Magazine as "human-animal amalgamations"-and research involving in vitro fertilization and preimplantation genetic diagnosis, as well as embryonic stem cells.
Our genetic material is unique to each of us, analogous to fingerprints. Moreover, DNA is closely intertwined with one's personal and cultural identity. Thus, we must take patients' personal values into account or risk repeating situations where researchers have arguably taken advantage of vulnerable individuals or populations. For example, in 2010 the Havasupai Indian tribe in Arizona received a settlement from Arizona State University as a result of genetic research that, in part, offended their cultural and spiritual beliefs. Likewise, Rebecca Skloot's 2010 book, The Immortal Life of Henrietta Lacks, effectively explained how utilizing biospecimens without consent can cause distress, even into the next generation. When researchers do not provide explicit information about the uses and purposes of biospecimens and the implications and consequences of participation-that is to say, when they do not consider patients' values-they risk endangering the public's trust in science and health care in general.
Ethical gray areas involving patient consent in biobanking research signal potential inconsistencies between what we, as nurses, say we believe and what we actually do in practice. Are current practices in obtaining biobanking consent sufficiently aligned with the socially sanctioned ethics and values of the nursing profession? Given the rapidly changing and highly complex research environment, we need to collectively strengthen our efforts to apply and advocate for the ethical principles of our profession and the personal values of our patients. One step forward would be for nurses to examine the current informed consent practices at their institutions and raise awareness about these important issues.