Students and parents questioned the ethics of human tissue donations with help from a biomedical ethics professor from John Hopkins University. Ruth Faden, the speaker for this year’s Opening Convocation in the Ted Wilson Gymnasium, based her lecture on the required reading for Colloquium.
Faden began by telling the story of Henrietta lacks. Incoming students were required to read “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. The books tells the story of Lacks, a poor black woman with five children in the ’50s. She was diagnosed with cervical cancer and treated at John Hopkins Hospital, one of the only hospitals willing to treat African American people at the time.
Without her consent or knowledge, doctors took tissue samples from Lacks and created an immortal cell line. lacks had special cells that were removed not for care, but for research. Doctors and researches used her cells to develop the polio vaccine that later saved many lives.
Lacks never gave consent for the removal of her tissues and calls. She never even knew about the researchers’ achievements or the sale of her cells.
Lacks’ identity was made public in 1971. The family never received any compensation and lacks died without knowing about her contribution to science.
Faden outlined the ethical issues surrounding this story and others like Lacks.
Should doctors get consent for all possible future uses o samples, even if they aren’t predictable?
SHould patients be compensated if the scientist profit? What and when should patients be told about the research findings from tissue samples?
Faden also brought questions of social justice to light.
The Lacks family could not afford to see doctors, even though their mother’s tissue gave researchers so much success. Their quality of life continued to suffer despite their mother’s legacy.
If the family had received compensation, would there sill be ethical questions?
What if the family was white and had access to health insurance? Would the situation have turned out differently?
Faden said yes, ethical questions still stand. She said there needs to be a better model for the donation of biomedical samples. The samples benefit all human kind.
Faden is the Philip Franklin Wagley Professor of Biomedical Ethics at John Hopkins University. She has written numerous articles and books about biomedical ethics, moral philosophy and health policies. She is also a member of the Institute of Medicine.
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