A study published in the European Journal of Human Genetics aimed “to optimize the information and consent process to meet participants’ expectations against the background of the LeukoTreat project database.”
The authors observe that the patients/families willing engaged in data sharing, which they believed was a collective and an altruistic mission. The authors also report that the participants have a high level of trust in the constitution and use of the database by researchers but were equally vigilant over the conditions use of the database. They wanted to be assured of compliance with the constitution and initial consent. The authors write that they also wanted to be kept abreast with current information especially with regard to potential partnership with the pharmaceutical industry for access to the database. The authors report the reluctance of respondents with pharmaceutical partnerships, “even though they recognize that such a partnership are valuable for therapeutic advance”, expressing concerns over their motive to work for profit rather than for the benefit of the patients.
The participants also raised concerns over “transparency on data storage and the length of data accessibility (even as) most respondents agree on no time limitation, as they feel that the data are precious, especially in their context of rare disease.” From the responses received during the study, the authors advocate broad consent, which makes it possible “to promote the development of research in a large and predefined field, avoiding the need to re-consent.”