Alice Smith is a 75 year-old woman with four adult daughters. Two years ago, she was treated for medullary thyroid cancer, a disease known to run in families. Alice dies. Now Lucy, Alice’s eldest daughter, has been diagnosed with medullary thyroid cancer. Lucy’s physician tells her she likely inherited the genetic alteration and encourages her to warn her siblings and her children. Lucy is very angry with her mother’s physician for not warning her. She feels that her cancer could have been detected much earlier if she had known she was at increased risk. Lucy considers filing a lawsuit against the physician.

Discussion Questions:

• Did Alice’s physician have a duty to warn Alice that medullary thyroid cancer runs in families and that she might wish to notify her family of their increased risk?
• Did Alice’s physician have a duty to warn Lucy and her sisters that they were at increased risk for a genetically transferable disease?
• If Alice’s physician had warned Alice, but she asked him not to say anything about this to her children, did the physician have a duty to keep silent or to warn the children?
• Would any of your answers change if you knew that an affordable test was available to detect early signs of medullary thyroid cancer?
• Would any of your answers change if an effective treatment was available to prevent the onset of this disease?

Additional resources:

Policy paper prepared by the ASHG Social Issues Subcommittee on Familial Disclosure

(B. M. Knoppers (Chair), C. Strom, E. Wright Clayton, T. Murray, W. Fibison and L. Luther)

"Professional Disclosure Of Familial Genetic Information"

Am. J. Hum. Genet. 62:474-483, 1998