Abstract
This essay analyzes two recent news stories wherein the issue of standard business communication consent forms has proved controversial. Legal action resulted when plaintiffs found that their DNA had been used and stored for purposes beyond the scope of the consent form and for which they did not give permission. Consent forms remain inadequate and incomplete in the area of DNA collection and do not provide proper information for donors so that they can make an informed choice about how their DNA will be used.
Ethical Issues and Future Trends
No one disputes the value of DNA research in the ongoing battle against disease. However, the business of scientific research in the future may face stiff ethical challenges on the basis of its existing communication tools. Universities and private DNA research firms often use consent forms to manage the acquisition and collection of DNA for one specific purpose, yet research itself often uses the DNA – without express permission from the donor – to underwrite a host of other unrelated research, some of which can cause harm to the donors.
One such recent example occurred in the case of Arizona’s Havasupai tribe, based in the Grand Canyon (Harmon, 2010). In the early 1990s 41 members of the tribe donated samples of their blood and DNA to researchers working with the Arizona State University (Harmon, 2010). In April of 2010 these same members won a settlement against the University in the amount of $700,000, plus the return of their blood and samples, for what the tribe deemed “genetic era betrayal” (Harmon, 2010).
The members discovered that the DNA they donated specifically for research into the tribe’s inordinately high incidence of type II diabetes onset was also used to support research into inbreeding, mental illness and migration patterns of the tribe’s ancestors (Harmon, 2010).
The tribe knew nothing of these others areas of research and did not offer permission for their DNA to be used in this manner. Also, the research employed to study the migration patterns and origins of the tribe’s ancestors suggested that the Havasupai arrived in North America via passage across the frozen Bering Sea (Harmon, 2010).
This not only discredited the tribal elders’ stories, but also threatened to undermine the tribe’s sovereign rights and endanger their ongoing land claim battles (Harmon, 2010). The Arizona State University spent nearly $2 million contesting the lawsuits launched by the Havasupai by tribe members (Harmon, 2010). The April 2010 settlement “appears to be the first payment to individuals who said their DNA was misused” (Harmon, 2010).
At the heart of this ethical issue lies the problem of the consent form. In the age of the business of scientific research’s increasing dependence of DNA to crack disease, to what extent does the consent form protect the rights of donors? This essay studies the case of the Havasupai tribe and so called “vulnerable” populations whose limited understanding of DNA research can lead to miscommunication and misappropriation in the business environment.
DNA holds personal information, and in cases such as the Havasupai tribe, the consent form often does not adequately communicate the full scope of how this personal information may be used or in certain instances abused by the scientific industry.
Similar to many other businesses, universities and private research firms typically employ a standard consent form to cover the harvesting of DNA from willing subjects. Federal law dictates that scientific researchers who hail from university campuses as well as those private enterprises in the business of DNA collection and testing must obtain “informed consent” from subjects (Harmon, 2010). The idea behind these protections is to ensure that participants remain clear on their rights.
However, the consent forms themselves typically originate from research that may expose participants to “physical risks, like experimental drug trials or surgery” (Harmon, 2010). These same consent forms often cannot predict the risks of DNA collection, since the culture surrounding DNA research demands full access. DNA donated for one purpose may prove useful for numerous others, and researchers themselves expect that once the DNA is in hand, all scientific uses become fair game.
The geneticist who initially harvested and used the Havasupai blood samples, Therese Markow, upheld the ethical consistency of her actions within the scientific industry (Harmon, 2010). Her detractors, in Markow’s words, “failed to understand the fundamental nature of genetic research, where progress often occurs from studies that do not appear to bear directly on a particular disease” (Harmon, 2010).
In the words of David Karp, M.D., a professor of internal medicine at the University of Texas Southwestern Medical Center, “the potential benefit from unencumbered biomedical research trumps the value of individual control. Everyone wants to be open and transparent, [but] the question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?” (Harmon, 2010). The Havasupai tribes argued yes, and the court agreed with them.
In another case that originated in Austin, Texas, a group of parents took federal legal action against the Texas Department of State Health Services, Commissioner David Lakey, M.D., Texas A&M, and Texas A&M Vice Chancellor for Health Affairs Nancy Dickey, M.D., for failure to produce satisfactory consent forms that informed parents of the collection and storage of blood drawn from their babies at birth (Roser, 2009).
The parents’ lawsuit claimed that the defendants “unlawfully and deceptively collected blood samples from their children at time of birth and stored those samples indefinitely for undisclosed research purposes, without plaintiffs’ knowledge or consent” (Roser, 2009).
The parents’ ire flared after they learned that their infant’s blood “was now state property” (Roser, 2009). The parents’ main fears stemmed from lack of information provided by the consent forms, and they were concerned that “the blood spots might be used someday to discriminate against their child” (Roser, 2009). The suit also charges that the state of Texas violates existing constitutional shields “against unlawful searches and seizures,” while simultaneously flouting existing privacy laws (Roser, 2009).
DNA research offers infinite potential in the area of disease control. Medical advances certainly owe much of their sustained growth and innovation to the use of DNA. Support definitely exists for the continued use of DNA testing and research to combat debilitating conditions such as diabetes, Alzheimers, heart disease and cancer. However, business communication tools have not grown apace with DNA improvement, and as a result donors consistently receive inadequate information.
The lack of information leads to lack of trust, and lack of trust in the public sphere has the potential to undermine public support, not to mention severely curtail the number of willing DNA donors. Existing consent forms do not “fully inform…research participants how their DNA may be used” argues law professor Hank Greely, and this communication glitch “sows distrust” (Harmon, 2010). Researchers will be hard pressed to continue their work without the trust and participation of donors.
DNA creates a new era of ethical challenges for business. Rather than continue to surreptitiously glean DNA via ignorance and inadequate consent forms, business communicators in the scientific industry need to open their process up to public scrutiny and become more transparent with their communication tools.
References
Harmon, A. (2010, April 21). Indian Tribe Wins Fight to Limit Research of Its DNA. The New York Times. Retrieved from https://www.nytimes.com/2010/04/22/us/22dna.html
Harmon, A. (2010, April 22). Havasupai Case Highlights Risks in DNA Research. The New York Times. Retrieved from https://www.nytimes.com/2010/04/22/us/22dnaside.html?ref=us
Roser, M. (2009, March 18). Parents Sue Texas Health Dept. and Texas A&M over Infant Blood Databank. Texas Civil Rights Project. Retrieved from https://texascivilrightsproject.org/