Dear Colleagues,

As we are marking the 100th birth year of Henrietta Lacks, the ELSI team at BBMRI-ERIC (Biobanking and BioMolecular resources Research Infrastructure – European Research Infrastructure Consortium) would like to highlight the Workshop ‘Looking Back, Going Forward: Re-thinking Genomic Data at

HeLa100’ which will take place next week (25th November | CET: 15:00 -

16:30). The event is online and open to all. The abstract and the registration details are:

Looking Back, Going Forward: Re-thinking Genomic Data at #HeLa100

Organized by Kaya Akyüz and Melanie Goisauf

Henrietta Lacks and the first immortalized human cell line, HeLa, have been influential in shaping both science and technology, from the development of the polio vaccine to discovering mechanisms of cancer. Just as important are their contributions to our understanding of research ethics and patient rights, above all informed consent. This year marks the 100th anniversary of Henrietta Lacks’ birth. With the momentum of the #HeLa100, we want to go back in time to a 2013 controversy surrounding HeLa cell line to reconsider our understanding of the genomic data and the relevant data practices. While the publications of HeLa genome by different research groups in the US and Europe without consent has been at the center of the 2013 debate, this episode also highlights the peculiarities of genomic data. Following a presentation on this case of controversy, we would like to open up the discussion to a broad group of participants to think outside the box in imagining the future, by asking the following questions: How to respect the rights of family members in case of de-identified/easily de-identifiable genomic data? What kind of safeguards are/will be necessary for biobanks in a highly datafied world? How could this episode animate better informed consent practices in biobanking?

This workshop is hosted by BBMRI-ERIC. It is co-funded by CY-Biobank, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 857122.

Register in advance for this meeting: https://cesnet.zoom.us/meeting/register/tJ0qd-uprT0rHtTRRyUU3Tl85MpmglVUOMwq

After registering, you will receive a confirmation email containing information about joining the meeting. For any issues regarding registration, please contact Viridiana Beltrán Venegas ( viridiana.beltran.venegas@bbmri-eric.eu).

We would also like to highlight the HeLa100 Centennial CELLebration , led by the Lacks family. Our event is not organized within this framework, but we would like to mention that the Centennial Celebration website is a great resource of various events that are being organized in honoring Henrietta Lacks.

We would be happy if you could spread the word and are looking forward to having you there.

Best,

Kaya Akyüz & Melanie Goisauf ELSI Services and Research, BBMRI-ERIC

[image: HeLA.png]

-- Kaya Akyüz ELSI Services and Research, BBMRI-ERIC

PhD Candidate in Social Studies of Science Department of Science and Technology Studies University of Vienna

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