Everyone is a stakeholder in biobanking. Specific interested parties include patients, patient groups, members of the public, researchers, biobank staff, hospital staff and hospitals, ethicists, lawyers, universities, international biobank experts, politicians, funding agencies and biopharmaceutical companies. This does not include the commercial sector that develops sophisticated software, laboratory equipment, storage systems, etc for use in biobanks.
In May 2018 The European Union introduced the General Data Protection Regulations (GDPR) which are designed to give EU citizens more control over their personal data. Although GDPR were intended to harmonise data regulation in member states, individual countries differ in their interpretation. In Ireland, the Data Protection Act and Health Research
Regulations (2018), passed in response to GDPR, have presented very significant challenges to biobanks and researchers.
In January 2015, US President Obama launched the Precision Medicine Initiative (to treat each patient according to his / her individual characteristics). This very large scale project will involve 1 million American participants and will depend on coordinated biobanking.
Since 2004, Biobank Ireland has held several meetings to promote awareness for, and obtain the input of the public and multiple stakeholder groups. Particularly relevant for all stakeholders were meetings in The Royal College of Physicians of Ireland in 2007, Croke Park in 2008, attended by the Minister for Health Mary Harney, and St James’s Hospital in 2014, all of which had positive media coverage. The 2014 meeting featured a panel of diverse biobanking stakeholders who were interviewed by Aine Lawlor of RTE. Fundraisers are very well supported because fundraising committees are extremely committed.
We continue to learn from and maintain best international practice through discussions with biobank experts at international meetings of the International Society for Biological and Environmental Repositories (ISBER) and European, Middle Eastern & African Society for Biopreservation and Biobanking (ESBB).