“Responsible Research” – Working towards a societally impactful research requires ethical, legal and societal standards

Given the rapid development of technologies and cross-disciplinary and -country research projects, there is an urgent need for ethical, legal and societal standards. In an article published recently in EMBO Journal, Prof. Maria-Elena Torres-Padilla from the Institute for Epigenetics and Stem Cells and her colleagues from the LifeTime Initiative discuss ethical implications of LifeTime and propose concrete strategies for responsible research.

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Even though, HeLa cells have led to many biomedical key discoveries, they are also an example for ethical failures in research. These cells were gained from tissue samples of a cervix carcinoma taken from the African American women Henrietta Lacks on February 9th 1951 in Baltimore. These cells were taken, studied and distributed without her or her family’s knowledge or agreement and since then, they cells have become an integral part of research. Moreover, the genome of these cells got decoded invaluable for science and since then, it is possible to make conclusions about the hereditary information of all the descendants of Henrietta Lacks, again without their agreement.

The times have changed and nowadays, research communities are aware and take care of ethical, legal and societal issues (ELSI) their research has. However, it becomes more and more challenging. Research projects are not a one-person show anymore, but can be split among different persons, labs, countries and continents. Moreover, with the ongoing advancement and development of innovative technologies researcher produce more and more data that become more and more sensitive.

One of such big international research communities is the Pan-European LifeTime Initiative that unites over 60 research centers across Europe with international advisors and over 70 companies. This consortium aims to unravel the early mechanisms behind cell abnormalities during disease progression to enable timely diagnosis and therapy. Therefore, they use single-cell multi-omics*, patient-derived organoids** and artificial intelligence to transform the precision of healthcare at a sustainable, patient-relevant scale. An important element of the patient-centered initiative was to identify the ethical and societal implications that may arise from the development of new technologies and to develop ways how to deal with them.

In the comment article, published recently in EMBO, Prof. Maria-Elena Torres-Padilla, Director of the Institute of Epigenetics and Stem Cells of the Helmholtz Zentrum München, and her colleagues from the LifeTime initiative, discuss the emerged ethical implications of LifeTime and propose concrete strategies for responsible research.

To read the full article, please go here.

Further information:

  1. Rajewsky, N. et al. (2020). LifeTime and improving European healthcare through cell-based interceptive medicine. Nature. 
  2. LifeTime Strategic Research Agenda. (2020)