Online Education Kit: The Benefits of Research: Do We Share the Wealth?

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


The Benefits of Research: Do We Share the Wealth?

Vignette:

Eva is a nurse working in Angola who has treated people infected by the Ebola virus for many years. Although most people who are infected with Ebola die quickly, she has been exposed frequently and has never gotten sick. Eva began to wonder whether there is something different about her that protects her from the virus. During a visit to the United States, Eva visits a local university where scientists are involved in Ebola research. She meets with one of the researchers and describes her experiences in Africa. She suggests that perhaps she is immune to the Ebola virus and offers to give a blood sample for the researcher's study. The researcher agrees, obtains informed consent, collects a blood sample, and thanks Eva for coming in. Informed consent is a legal process where a participant or patient knows all of the risks and costs involved in a study, treatment, or test. Informed consent must be given voluntarily. The researcher uses Eva's blood sample in his research and finds that she is immune to the virus.

Several years later, the researcher and her coworkers have used their knowledge about Eva's unusual cells to develop a new treatment for Ebola. The treatment works well and has few side effects. The press reports on the new treatment and it becomes widely used. Soon, the researchers who developed the treatment are receiving a large amount of money, referred to as royalties, from selling the treatment to a drug company.

Meanwhile, Eva has heard about the success of the treatment that began with her blood sample. While she is proud to have played a role in saving lives, she also feels that she is entitled to a share of the profits. She again meets with the researcher; this time to plead her case for receiving some portion of the money. The researcher listens to Eva and politely explains that she is not entitled to share in the royalties. She says that the money only rewards those who contributed to creating the new treatment and supplying a blood sample is not enough of a contribution.

Eva leaves the meeting dissatisfied. She feels that she did more than just provide a blood sample because it was her idea that there was something different about her blood. In Eva's view, all of the researcher's work was based on her idea. She decides to discuss the matter with a lawyer and perhaps file a lawsuit seeking a share of the royalties.

Discussion questions:

Researchers often use tissue donated by volunteers to study and develop possible future treatments.

  1. What information do you think these volunteers need to know and agree on before donating their tissue or blood?

  2. Should researchers be allowed to use tissues obtained from hospitals that otherwise would be destroyed, such as blood samples?

    1. If so, based on ethical reasons, should patients be notified that their tissues were used for research?

    2. Based on legal reasons, should patients be notified that their tissues were used for research?

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Last Updated: April 2, 2012