Patients as Partners in Medical Research
By Susan Van Dusen
Patients are integral partners with UAMS in the advancement of new knowledge in health and health care.
By permitting UAMS to bank their tissues and other physical specimens, patients contribute to the development of new discoveries that can be brought to bear on them and their families.
Medical ethics has never been more important as research institutions such as UAMS seek to enhance their relationships with patients.
As director of the UAMS Tissue Procurement Facility, Leah Hennings, D.V.M., oversees the human biospecimen repository, which has been in place for eight years. It serves as a collection, processing and storage facility for tissue from many types of malignant tumors, as well as benign brain tumors, urine and blood.
“The process of educating patients and gaining their consent is done prior to their surgical procedure,” Hennings said. If the patient agrees to consider a tissue donation, a member of the Tissue Procurement Facility staff sits with the patient and family members, if present, to explain the process, answer questions and complete the necessary paperwork.
It’s a long way from how many medical institutions used to interact with patients. Take the story of Henrietta Lacks, publicized in the best-selling book “The Immortal Life of Henrietta Lacks” by Rebecca Skloot.
Born in Virginia in 1920, Lacks was only 31 years old when cervical cancer claimed her life. Although she has been dead for more than 60 years, her “immortal” cells have influenced research and major medical breakthroughs in ways no one could have predicted.
HeLa cells, as they became known, were instrumental in the development of the polio vaccine, in vitro fertilization and commonly used cancer drugs. However, Lacks never consented for her cells to be used in research, and it was 20 years after her death when her family discovered the truth about her unknowing contribution to science.
The complex story of Lacks’ cells illustrates an important era in medical research history during which people — particularly vulnerable populations such as children, the poor and the disabled — were used in medical research against their will or without their knowledge.
“Until the mid-20th century, we were in an era where physicians and researchers were so focused on the good goals and ends of research that they lost sight of how it was affecting people. Now the tide has turned and we are in an era where we strive to protect and respect human subjects and their privacy,” said D. Micah Hester, Ph.D., chief of the Division of Medical Humanities at UAMS.
This respect is played out every day at UAMS when patients are consulted about the possibility of becoming participants in medical research.
“There is a process called informed consent during which a patient is educated about the risks and benefits of participation so they can make an informed decision,” Hennings said.
It’s made clear to patients that no extra tissue will be removed during surgery and that their samples will be identified only by a number, not by their personal information.
Registered nurse practitioner Mindy Gibbons, clinical research nurse for the Tissue Procurement Facility, said most patients “recognize the value of research to the future of medicine.”
While almost all tissues samples taken at UAMS are used in research programs at the university, it is possible for them to be used elsewhere, aiding in research across the country.