EU opens personal health data to the scientific community

Source: on December 28, 2015, European scientists in China Science Daily won an important battle to obtain personal health data One research union had worried that the draft EU legislation would strictly limit the scientific use of such data However, the scientist friendly amendment has recently emerged from the consultations of the European Parliament, the European Council and the European Commission "We are happy with this result." Beth Thompson, policy advisor, Wellcome foundation, London, UK She helped organize a campaign that lasted for months to persuade politicians and officials to change legislation "This compromise solution works for both the research community and individuals." Three years ago, scientists welcomed the European Commission's original draft legislation The draft attempts to harmonize privacy rules for continental data collection, storage and exchange Last March, however, the European Parliament amended the bill to require specific consent for the use of any data in medical research This clause will force researchers to obtain permission from their subjects when carrying out any new research direction, with few exceptions At the same time, subjects will not be able to license a wide range of licenses, even if they want to Thompson and others believe this could jeopardize large-scale investments in disease registration, cohort research and bio banking In response, a wide coalition of European institutions issued an open letter calling for the right to conduct research using personal health data without explicit consent, provided ethical approval and strict confidentiality measures are guaranteed In December 2014, Wellcome foundation and six other institutions jointly established the European health research data union to protect medical research from restrictive regulations The effort paid off: under the revised legislation, scientists would get any data on patients and subjects who gave a package of consent to the study "All areas will facilitate research as much as possible." Jan Philipp Albrecht, a member of the European Parliament who helped draft legislation, said At the same time, data can be used permanently for research as long as consent is not explicitly revoked The bill is expected to be approved early next year.