New biomedical innovations offer the promise of personalised medicine and health. Getting there requires huge amounts of sensitive personal health and care data.The PhD thesis of Martin Boeckhout (Promotors prof. dr. A.L. Bredenoord and prof. dr. G.A. Zielhuis, defended on June 6th, 2019) investigates the ethical challenges for health research infrastructures that facilitate the collection, management and use of such data.
Contemporary research data is usually collected with the expectation of systematic reuse. This is a positive development, but responsible data stewardship also requires quality control, privacy protection, and policies for sustained public availability of health research data. Ethics review is an important means to stimulate and provide oversight over such measures. For Dutch biobanks facilitating research with human tissue, this is now standard practice, but the shape of such review still varies considerably.
The systematic integration of data-driven research into health care could bring along additional risks to patients and patient care. However, research and care also stand to benefit from such integration, particularly for symptoms, diseases and treatments about which little is known. This calls for extensive involvement of patients and enhanced attention to the professional responsibility of health researchers. Expanding the scope of research settings calls for further reflection on the impact of research.
More and more patients and citizens contribute personal health data and human tissue to health research. This calls for measures aimed at privacy protection, personal data control, and active participant involvement in shaping research. In contributing to such goals, ethics parallel research can also help contribute to a responsible embedding of health research infrastructure in health care and society.
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