📢 Now available for public comment draft WHO principles for human genome data access, use, and sharing.

We now invite comments and feedback from all individuals, organisations, and entities interested in #genomics #datasharing #dataccess

who.int/news-room/arti…

At Montefiore Health System and Albert Einstein College of Medicine - Official, we will be working with #Bronx community leaders to get their guidance to refine this document. I like the final version, reflecting the consensus of a great group of international colleagues, under the leadership of Ciara Staunton

Interested in #datasharing #datagoverance #dataprotection for #health #genetic #research ?

Join the DS-I Africa Law who launch their country reports on cross-border data sharing in 12 African countries next week.

Link to the session: lnkd.in/di5NYQGB.

I learned a lot from this discussion with Bruce Schneier about the 23andMe hack.

Thanks to Robert Cykiert for having me on the Doctor Podcasts this week.

Nice opportunity for a thoughtful discussion about the decisions we should be making when sharing our genomic information.

Our paper on preferences for #governance of #healthdata #datasharing is now out! Important findings for evolving discussions on #EHDS
jmir.org/2023/1/e47066/

In this recent publication, we document narratives of stigma and sickle cell disease (SCD); Drivers of SCD-related stigma; and strategies for mitigating stigma. Full text oarticle is available at link.springer.com/article/10.100…. Julie Makani #sicklecelldisease , #QualityofLife , #Stigma

Join the TODAY #virtual PEOF session at 14:30 CET📆 Explore the IMI #FACILITATE project and how
it is building an ethical framework that puts patients
at the center while ensuring data privacy and data
reutilization.
✅Register now bit.ly/3M96zOS
Made WITH Patients

Looking forward to the DS-I Africa meeting next week to give a keynote on #EHDS #data sharing #secondaryuse #genetic #data #healthdata . Very keen to see friends and colleagues & connect with those who have experiences in #crossborder data sharing - do get in touch!

Looking forward to interesting discussions at our first regional workshop which will focus on #AnglophoneAfrica #conceptualisations of #Solidarity
#ghsn
Barbara Prainsack (@[email protected]) Gabriela Arguedas😷💉🧼💦🤲🏼 Practical Bioethics The Hastings Center University of Ghana Caesar Atuire Wellcome

We are still searching for researchers for the Global Index on Responsible AI to undertake the data collection through an expert survey for Czechia, Estonia, Finland, Norway, Portugal and Turkey. Please do get in touch!! Global Index on Responsible AI IDRC | CRDI

I'm delighted to have started this week as a Consultant to the WHO on Guiding Principles for Human Genome Data Sharing

#Genomics #datasharing

#Reminder
We are still looking for researchers in #Austria , #Bulgaria , #Czechia , #Cyprus , #Denmark , #Estonia , #Finland , #Germany , #Ireland , #Latvia , #Lithuania , #Netherlands , #Norway , #Poland , #Portugal , #Slovakia , #Slovenia , #Spain , #Iran , #Turkey , #Israel and #Sweden .
RT

Breaking news! Partnership between UNESCO 🏛️ #Education #Sciences #Culture 🇺🇳 & European Commission to speed up the implementation of ethical rules for #ArtificialIntelligence !

We'll allocate €4 million to support #AiEthics legislation in the least developed countries:
unesco.org/en/articles/ar…

Great to see Aminu Y. & Prof de Vries discuss much of the work we did as part of Human Heredity and Health in Africa & the importance of open access platforms

📢 Governance of Medical #AI – Hong Kong, 9-11 May 2023

European #HealthData Space: The Panacea for #DataSharing in Europe?

@CiaralStaunton

#Bioethics #AI Ethics #HealthLaw Biomedicine - Eurac Research

Thank you Colleen M. Flood !! A few more photos with you in them this time 😁, together with Karel Caals Johanna Maria Catharina BLOM Colin R Mitchell Li Du 杜立 Ciara Staunton Deborah Mascalzoni Alessandro Blasimme HKU Centre for Medical Ethics & Law & conference participants on the Peak 😊

with FLTR: Karel Caals Johanna Maria Catharina BLOM Ho Chih-hsing Colin R Mitchell @DuLi423 Calvin Ho @CiaralStaunton Deborah Mascalzoni Ji Ping @A_Blasimme & Zhang Haihong

Thank you Colleen M. Flood for taking the photo ‼️