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


Sub-biobank MEMORY

15 September 2020

The MEMORY biobank focuses on research into biomarkers for memory impairment and dementia and their validation in clinical cohorts.

read more

RYR1 sub-biobank

15 September 2020

The RYR1 biobank is part of a study of the neuromuscular and multisystem features of patients with malignant hyperthermia or rhabdomyolysis related to RYR1 (ryanodine receptor type 1) variants.

read more

New colleague

15 September 2020

My name is Robbert Croes and I started mid 2020 as a data-scientist at the Radboud Biobank.

read more

ProBCI sub-biobank

15 September 2020

There is a pressing need for predictive biomarkers to personalize bladder cancer treatment.

read more

Financial regulation for sub-biobanks

15 September 2020

Sub-biobanks are not required to pay up-front for the processing and storage of biomaterials. The effectiveness of this pre-financing agreement however is dependent on adherence to the demands regarding delivery and processing according to the Radboud Biobank standard operating procedures.

read more