Visualizing the Complexity of Sex Determination
Scientific American communicates the latest and most important information about science, health, technology, the environment, and society to the public. Information graphics are often used to help illuminate complex ideas that are hard to explain fully through words alone. A few years ago, Amanda Montañez led the development of a graphic on the spectrum of biological sex. In this talk, she explained the process of how the graphic was developed, what she learned, and how this project fits into her work as a graphics editor at Scientific American.
Speaker: Amanda Montañez
Ethics of AI in Imaging: Ethical and Societal Implications
Artificial Intelligence (AI) applications in medicine are hoped to improve healthcare and to advance health equity. While the technology carries the potential to improve health services, the ethical and societal implications need to be carefully considered to avoid harmful consequences for individuals and groups, especially for the most vulnerable. It is therefore inevitable to identify what types of ethical issues are raised by AI, and to analyse how these issues are tackled in biomedical research. This webinar gives an overview of the results of a comprehensive and systematic review of academic literature as well as workshop outcomes.
Speakers: Mónica Cano Abadía and Melanie Goisauf
EU support to gender equality in research and innovation
This talk will provide an overview of the strengthened provisions for gender equality in Horizon Europe, explaining how gender equality plans can become a game changer for structural change at research organizations, and why integrating the gender dimension in research proposals matters.
Speaker: Jeanne Lender
Biobanking with children
Biobanking with children is a practical vector of empowerment and engagement. Without having to expose the minor participants to possible clinical risks, it provides understanding of the biomolecular turn of research and medicine, emphasises the impact of genetic knowledge on the life of each child and on society in general, and expands the collaborative horizon at stake. However, it offers challenges as it poses specific ethical issues in relation to assent, consent and re-consent and therapeutic misconception, while it asks for a rethinking of the processes of data sharing and disclosure of results within a rights horizon, tailored to children.
Speakers: Bridget Ellul and Sara Casati
Futureproofing Biobanks’ Governance
Ethically robust governance is key to ensure public trust in biobanking and fair and efficient exploitation of valuable research resources. Principles of good governance include transparency, accountability and appropriate oversight.
Speaker: Alessandro Blassime (Department of Health Sciences and Technology)
Psychosocial characteristics of potential participants in biobanking
A study on the Polish population.
Speaker: Jakub Pawlikowski
The BBMRI-ERIC ELSI Helpdesk – Personalising ELSI Support
The BBMRI-ERIC ELSI Helpdesk is a personalised support service assisting researchers with any ethical, legal and societal questions they may have in the context of research projects. By sharing expertise, the Helpdesk assists researchers in navigating their way through the ethical and legal landscape, offering guidance on topics that are crucial in biobanking, such as informed consent and data protection, in order to promote compliance with regulatory requirements and best practice principles. This webinar is for you if you are interested in finding out more about the ELSI Helpdesk, how it works and what’s happening behind the scenes and screens, as well as the future trajectory of the service.
Speaker: Jasjote Grewal (BBMRI-ERIC)
Looking back, going forward – Re thinking genomic data at #HeLa100
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. 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?
Status Update Code of Conduct: Teaming up & Talking about it
Committed to the drafting of a Code of Conduct for the sector of health research according to Art. 40 GDPR, our initiative is advancing slowly but steadily. On a practical level, a code is potentially a cost-effective method to achieve greater levels of consistency of protection as well as a mechanism to demonstrate compliance with the GDPR. By spring 2020, several hundred individuals representing around 90 organizations in the field of health research have indicated their interest and support for the Code of Conduct for Health Research. At this stage, this does not yet indicate an endorsement but means that they see a benefit in the development of such a code and are interested in partaking in the process. Additionally, several exchanges take place with national and sectoral codes in order to use synergies and finds ways for collaboration. This webinar is intended to inform you about the latest results.
Speaker: Michaela Th. Mayrhofer (BBMRI-ERIC)
The BBMRI ELSI Services across the Nodes and BMS RIs
The BBMRI-ERIC ELSI Services supports facilitating compliance with regulatory requirements and best practice standards. The service started working for the biobanking community and subsequently extend to the BMS community and includes.
Speaker: Michaela Th. Mayrhofer (BBMRI-ERIC)
Ethical, legal and societal issues in international data sharing
The goal of this webinar will be to present the first findings of the ELSI activities in the CINECA project, ranging from questions of ethics of data sharing across continents to legal basis of secondary processing of personal data, consent requirements and vulnerable groups or public and stakeholders’ attitudes toward sharing of genomic and health related data for research.
Speakers: Éloïse Gennet (INSERM) and Melanie Goisauf (BBMRI-ERIC)
Ethical handling of incidental findings in research
In this webinar, Eline Bunnik will reflect on the results of two interview studies on the impact of incidental findings, detected in the brain during research imaging, on research participants’ lives, to sketch the ethical dilemma. Also, she will present a 7-step framework for the responsible handling of incidental findings. Finally, Eline will highlight the key recommendations of our practical guide, and point out open questions for discussion.
Material and Data Transfer Agreements
This webinar will walk you through the topic of MTAs and DTAs.
Speaker: Olga Tzortzatou
Completing the Ethics Self-Assessments for H2020 Proposals
This video provides guidance on completing the Ethics Self-Assessment section in H2020-funded project proposals for the European Commission. Jasjote Grewal of BBMRI-ERIC leads you through, step-by-step, and answers frequently asked questions. Created by the BBMRI-ERIC ELSI Services & Research team (Ethical, Legal and Societal Issues).
The GDPR and Scientific Research
This webinar focuses on how the GDPR impacts scientific research.
Speaker: Victoria Chico
COVID-19 and Ethical, Legal and Societal Issues
This webinar from BBMRI-ERIC’s ELSI Services & Research team is focused on the ethical issues encountered and addressed during the COVID-19 outbreak in relation to biobanking, looking at cases from Italy and Germany. Additionally, it addresses legal and societal aspects, which ultimately touch upon the intersection between clinical routine and research. The presentations are followed by an interactive discussion.
Speakers: Michaela Th. Mayrhofer (BBMRI-ERIC), Marialuisa Lavitrano (BBMRI.it), Roland Jahns (German Biobank Node), and Gauthier Chassang (INSERM / BBMRI-ERIC ELSI)
Participant engagement in longitudinal population studies/cohorts
Retaining several generations of participants in longitudinal cohorts and ensuring that the participants continuously contribute with new data and support data sharing is challenging. Participants gradually drop out, do not respond to data collection requests, or simply lose interest in the study. Young people, disadvantaged socio-economic groups, and ethnic minorities are particularly difficult to retain for a long period of time. At this digital workshop, the strategies of key European cohorts will be presented and discussed, and experiences exchanged. Work conducted to map participant engagement strategies in European cohorts will also be presented. The workshop is jointly organized by BBMRI-ERIC and Biobank Norway.
