The Mayo Clinic Biobank: A Building Block for Individualized Medicine

Abstract

OBJECTIVE To report the design and first three years of enrollment of the Mayo Clinic Biobank. PATIENTS AND METHODS Preparations for this Biobank began with a 4-day Deliberative Community Engagement with local residents to obtain community input into the design and governance of the biobank. Recruitment, which began in April 2009, is ongoing with a target goal of 50,000. Any Mayo Clinic patient who is 18+ years, able to consent, and a US resident is eligible to participate. Each participant completes a health history questionnaire, provides a blood sample and allows access to existing tissue specimens and all data from their Mayo Clinic medical record (EMR). A Community Advisory Board provides ongoing advice and guidance on complex decisions. RESULTS After three years of recruitment, 21,736 subjects have enrolled. Participants were 58% female, 95% of European ancestry, and median age of 62 years. Seventy-four percent lived in Minnesota, 42% from Olmsted County where the Mayo Clinic Rochester is located. The five most commonly self-reported conditions were hyperlipidemia (41%), hypertension (38%), osteoarthritis (30%), any cancer (29%), and gastroesophageal reflux disease (26%). Among self-reported cancer patients, the five most common types were non-melanoma skin cancer (14%), prostate cancer (12% in men), breast cancer (4%), melanoma (3%), and cervical cancer (2% in women). Fifty-six percent of participants had at least 15 years of EMR history. To date, over sixty projects and over 69,000 samples have been approved for use. CONCLUSION The Mayo Clinic Biobank has quickly been established as a valuable resource for researchers.

Should pretest genetic counselling be required for patients pursuing genomic sequencing? Results from a survey of participants in a large genomic implementation study

“…To create the sample, the Mayo Clinic biobank, a genetic biobank with approximately 55 000 samples,8 along with a smaller Vascular Disease Biorepository,9 were screened to identify 5106 eligible participants exhibiting one or both of the phenotypes of interest. Eligible participants were mailed a study packet containing a letter of invitation, a study brochure, a ‘Frequently Asked Questions’ document and an informed consent document.…”

A novel housing-based socioeconomic measure predicts hospitalisation and multiple chronic conditions in a community population

“…This study enrolled all eligible adult Mayo Clinic primary care patients who were enrolled voluntarily in the Mayo Clinic Biobank (MCB)21 and were residents of Olmsted County, Minnesota, USA 22. We limited our study patients to MCB participants living in Olmsted County at the time of MCB enrolment because HOUSES is available to the Olmsted County population only.…”

Enjeux éthiques et sociaux de la médecine génomique

“…Il s'agit donc d'une démarche éminemment interdisciplinaire, associant sciences biomédicales et sciences humaines (sociologie, philosophie, psychologie, économie, anthropologie, droit), et qui devrait de plus impliquer les futurs usagers d'une médecine génomique en voie de constitution: les patients et les citoyens. Plusieurs centres de recherche engagés dans le dévelop-pement de biobanques génomiques, en particulier au Canada, au Royaume-Uni et aux Etats-Unis [24][25][26], ont d'ailleurs mis en place des dispositifs de gouvernance participative associant des patients à la définition des usages pertinents de ces outils, par exemple pour ce qui concerne la définition des priorités de recherche ou les modalités de retour des résultats aux malades.…”