TY - THES ID - 134553680 TI - “I really, really really want a cure, don´t you?” What motivates patients to participate in research sponsored by companies that sell genetic tests online, directly to consumers? AU - Henriques Vaz da Conceição, Maria de Fátima AU - Borry, Pascal. AU - KU Leuven. Faculteit Geneeskunde. Opleiding Master of Bioethics (Leuven) PY - 2018 PB - Leuven KU Leuven. Faculteit Geneeskunde DB - UniCat UR - https://www.unicat.be/uniCat?func=search&query=sysid:134553680 AB - The model of direct to consumer companies (DTC), in which genetic tests are being advertised and/or sold to the public, outside of the traditional health care approach, have raised scientific, regulatory and ethical debates. Through the years, health-research sponsored by companies like 23andMe, alone or in collaboration with other stakeholders, has increasingly become an important part of their activity, with a recent shift to studies that search for new drug targets. In this study, we explored why patients that are consumers of 23andMe, engage in research related activities sponsored by this company. We performed thematic analysis of YouTube videos posted either by the company or personal bloggers, that included testimonies of research participation related to chronic diseases. Several themes emerged from our analysis: research contribution, expectation of benefits, empowerment and community engagement. Our data give insight about what drives patient participation in DTC genetic test (DTCGT) research platforms. We discuss these motivations in light of 23andMe recruitment and consent practices. ER -