Motivations, concerns, and experiences of women who donate normal breast tissue.

BACKGROUND The Susan G. Komen for the Cure Tissue Bank at the IU Simon Cancer Center (KTB) was established in 2007 with funding from Susan G. Komen for the Cure to provide scientists with a resource for normal breast tissue. To date, nearly 3,500 women have donated their healthy breast tissue to the bank, but little is known about their perspectives. This study was designed to examine their motivations, concerns, and experiences. METHODS We conducted brief interviews with donors (n = 221) to investigate their donation-related motivations, concerns, and experiences. Donor responses were coded and quantitatively analyzed (descriptive statistics and χ(2)). RESULTS The most frequent motivation to donate (48% of donors) was personal connection to a breast cancer patient/survivor. A majority of donors (60%) were unconcerned about donation before the event; reported concerns included pain, fear, and dislike of surgical procedures. The most frequent positive experiences were minimal pain and positive behavior by KTB staff and volunteers. A majority of donors (61%) reported no negative experience, but reported negative experiences included the biopsy machine and anesthetic. Younger donors (ages 18-24) reported more concerns and negative experiences than older donors (25+). CONCLUSIONS Donors of healthy breast tissue are motivated by survivor connections and the ability to help by donating. Their concerns and experiences are relatively positive and consistent with undergoing a minor surgical procedure. Younger donors have more concerns and negative experiences. IMPACT Findings from this study can inform recruitment campaigns and donation procedures for banking of healthy tissue.