title: Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research.
abstract: Although social and ethical issues related to the storage and use of biologic specimens for genetic research have been discussed extensively in the medical literature, few empiric data exist describing patients' views. This qualitative study explored the views of 26 female breast cancer patients who had consented to donate blood or tissue samples for breast cancer research. Participants generally did not expect personal benefits from research and had few unprompted concerns. Few participants had concerns about use of samples for studies not planned at the time of consent. Some participants did express concerns about insurance or employment discrimination, while others believed that current privacy protections might actually slow breast cancer research. Participants were generally more interested in receiving individual genetic test results from research studies than aggregate results. Most participants did not want individual results of uncertain clinical significance, although others believed that they should be able to receive such information. These data examined the range of participants' views regarding the storage and use of biologic samples. Further research with different and diverse patient populations is critical to establishing an appropriate balance between protecting the rights of human subjects in genetic research and allowing research to progress.
authors.affiliation: Center for Community-Based Research, Dana-Farber Cancer Institute, Boston, MA, USA. kkaphing@mail.nih.gov
authors.forename: K A
authors.initials: KA
authors.lastname: Kaphingst
authors.forename: J M
authors.initials: JM
authors.lastname: Janoff
authors.forename: L N
authors.initials: LN
authors.lastname: Harris
authors.forename: K M
authors.initials: KM
authors.lastname: Emmons
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics / Q000473:pathology / Q000523:psychology*; D030881:Disclosure; D033002:Duty to Recontact; D005260:Female; D036281:Genetic Research; D006801:Humans; D014019:Tissue Donors / Q000523:psychology*