17 October 2019

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.

 
  • Want to know more about these subjects? Click on the buttons below for more news.

    Radboud Biobank

Related news items


Control over Human Biomaterials Act [Wet zeggenschap lichaamsmateriaal] (Wzl)

19 July 2022

The Ministry of Health, Welfare and Sport (VWS) is currently preparing a Control over Human Biomaterials Act [Wet zeggenschap lichaamsmateriaal] (Wzl) which will serve in the future as a specific legal framework for the (further) use of body tissue for medical scientific research.

read more

Health-RI annual report

19 July 2022

Health-RI has presented the 2021 annual report. In this report they outline an overview of recent activities and results of the past year 2021 (in Dutch).

read more

SPIDI sub-biobank

19 July 2022

The SPIDI collection aims to assess the prognostic value of MRI-DWI (new form of MRI research) and biomarkers (brain-specific proteins in cerebrospinal fluid) in the first 24 hours after the occurrence of a spinal cord injury as a result of trauma.

read more

MyCoS sub-biobank

8 April 2022 The Radboud Biobank has added one new sub-biobank to the collection: MyCoS. read more