Moral and Fair
An obvious statement: research is the bedrock of healthcare. Without research, which in most instances includes human volunteers, we wouldn't have the many medical advances we do today. However, how researchers obtain study participants and their samples is paramount and must be done ethically
at all times.
In recent years, there have been quite a few revealing cases of unethical research methods, including:
- The Texas Department of State Health Services sent 800 anonymous samples of newborn blood spots to a military DNA lab without the informed consent of the parents in 2003 and 2007.
- A recent nonfiction book, The Immortal Life of Henrietta Lacks, shed light on how Lacks, a poor African-American woman who died from cervical cancer, contributed to the medial field without her consent. While undergoing radiation treatment, part of her cancerous tissue was removed. From the cells in this tissue, researchers at John Hopkins Hospital figured out cells could thrive in a laboratory environment; these "HeLa" cells helped find a cure for polio and aided in breakthroughs in HIV research, among other advances.
- Members of the Havasupai tribe, a group of Native Americans who live in the Grand Canyon, had given Arizona State University their DNA samples back in 1990, thinking the research was to find out why the tribe had such an incredibly high rate of diabetes. They found out later their blood was used for other research topics such as mental illness and the tribe's geographic origins; of course, this research was done without their consent.
One may wonder why informed consent wasn't used in all these cases. But even if there is informed consent, the Five Ws and one H (who? what? when? where? why? and how?) are also important when obtaining human samples for research.
A recent situation that is raising flags for ethicists happened this month in Minnesota. At the State Fair, researchers from the University of Minnesota in Minneapolis collected DNA samples from children ages 1-11 and their parents "to uncover genetic influences on normal child health and development."
In return for their participation, the little fair-goers received ride tickets, passes to attend next year's fair and other small presents. Researchers are hoping to continue their study at the fair again next year.
As previously mentioned, medical research can lead to important discoveries, as it had in the Lacks case and as it may for the researchers at the University of Minnesota. However, is a fair an appropriate place to ask for DNA samples?
How do you feel about these cases? Please share your thoughts here.