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30 Oct
ELSIconversations: ELSIconversations: Exploring the E in ELSI | October 30th, 2026 | 12PM ET/ 9AM PT via Zoom
Join us on October 30 at 12PM ET/9AM PT for ELSIconversations - The ‘E’ in ELSI. This session will explore ethical, or normative, dimensions of ELSI research. Using the case study of expanded newborn screening, ELSI scholars Lisa Parker, PhD, Kyle Brothers, MD, PhD, and Josephine Johnston, LLB(hons), MBHL will take up three questions: what normative methods are and how to describe them well; how empirical and normative work inform one another in ELSI research; and what distinguishes the questions normative scholars ask and the products they produce. The conversation will focus on what it looks like to do this work well in practice.The conversation will be moderated by James Tabery, PhD, MA.
Presenters: Kyle Brothers, MD, PhD; Lisa Parker, PhD; Josephine Johnston LLB(hons), MBHL
Moderator: James Tabery, PhD, MA
Join us on October 30 at 12PM ET/9AM PT for ELSIconversations - The ‘E’ in ELSI. This session will explore ethical, or normative, dimensions of ELSI research. Using the case study of expanded newborn screening, ELSI scholars Lisa Parker, PhD, Kyle Brothers, MD, PhD, and Josephine Johnston, LLB(hons), MBHL will take up three questions: what normative methods are and how to describe them well; how empirical and normative work inform one another in ELSI research; and what distinguishes the questions normative scholars ask and the products they produce. The conversation will focus on what it looks like to do this work well in practice.The conversation will be moderated by James Tabery, PhD, MA.
Presenters: Kyle Brothers, MD, PhD; Lisa Parker, PhD; Josephine Johnston LLB(hons), MBHL
Moderator: James Tabery, PhD, MA
https://us06web.zoom.us/j/89962975390?pwd=h48nX7nBK8UbAmQXYthOCZ5PWbAK8S.1
13 Nov
ELSI Friday Forum | November 13th, 2026 | 12PM ET/ 9AM PT via Zoom | Genetic surveillance and the criminalization of immigration: Implications for policing the general population
DNA testing has long been used by US immigration agencies to verify family relationships, and as we discussed in the July, 2026 ELSI Friday Forum, genetic tests are also being used to reunify families in humanitarian crises. In the last few years, however, the collection, testing and uses of DNA in the immigration context has been expanded exponentially in the US, and has been estimated to include DNA from approximately 2,000 US citizens.. This genetic information is now deposited in the FBI’s Combined DNA Index System (CODIS) database, which was originally established to solve violent crimes. The Privacy Center at the Georgetown Law School determined that, as of December, 2025, the number of these samples indexed in CODIS exceeded 3.3 million. This ELSI Friday Forum will lay out the current state of DNA testing of immigrant communities in the US, and the ethical, legal, and social implications of the government’s expanded genetic surveillance capabilities for immigrants and citizens alike.
Moderator: Christi Guerrini, JD, MPH
Presenter: Stevie Glaberson, JD, LLM; Medha Makhlouf, JD
DNA testing has long been used by US immigration agencies to verify family relationships, and as we discussed in the July, 2026 ELSI Friday Forum, genetic tests are also being used to reunify families in humanitarian crises. In the last few years, however, the collection, testing and uses of DNA in the immigration context has been expanded exponentially in the US, and has been estimated to include DNA from approximately 2,000 US citizens.. This genetic information is now deposited in the FBI’s Combined DNA Index System (CODIS) database, which was originally established to solve violent crimes. The Privacy Center at the Georgetown Law School determined that, as of December, 2025, the number of these samples indexed in CODIS exceeded 3.3 million. This ELSI Friday Forum will lay out the current state of DNA testing of immigrant communities in the US, and the ethical, legal, and social implications of the government’s expanded genetic surveillance capabilities for immigrants and citizens alike.
Moderator: Christi Guerrini, JD, MPH
Presenter: Stevie Glaberson, JD, LLM; Medha Makhlouf, JD
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
04 Dec
Traineehub: Pathways | December 4th, 2026 | 12PM ET/ 9AM PT via Zoom
How do you build an academic career in ELSI? What can you do with the ELSI skillset outside of academia? How do you identify the ELSI path that works best for you (i.e private sector, government, tech, etc)?
If you’re wondering about how to move along your professional career in ELSI, check out TraineeHub’s series: ELSI Career Pathways. This series will host ELSI professionals to share their experiences navigating their career, highlight different career trajectories across the ELSI field, discuss obstacles, and provide tips for being resilient.
Our session on December 4th at 12:00 pm ET/9:00 am PT, will feature Megan Doerr, MS, LGC, who will share her professional journey to becoming a Director and Advisor at Sage Bionetworks.
Meeting ID: 897 0097 0893
Passcode: 008525
How do you build an academic career in ELSI? What can you do with the ELSI skillset outside of academia? How do you identify the ELSI path that works best for you (i.e private sector, government, tech, etc)?
If you’re wondering about how to move along your professional career in ELSI, check out TraineeHub’s series: ELSI Career Pathways. This series will host ELSI professionals to share their experiences navigating their career, highlight different career trajectories across the ELSI field, discuss obstacles, and provide tips for being resilient.
Our session on December 4th at 12:00 pm ET/9:00 am PT, will feature Megan Doerr, MS, LGC, who will share her professional journey to becoming a Director and Advisor at Sage Bionetworks.
Meeting ID: 897 0097 0893
Passcode: 008525
https://us06web.zoom.us/j/89700970893?pwd=rfoGDDJ77nXzaAZUFBm3Daw2kI8so4.1
11 Dec
ELSI Friday Forum | December 11th, 2026 | 12PM ET/ 9AM PT via Zoom
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
08 Jan
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
12 Feb
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
12 Mar
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
09 Apr
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
14 May
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
11 Jun
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1
09 Jul
ELSI Friday Forum | September 11th, 2026 | 12PM ET/ 9AM PT via Zoom
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
Beyond Consent and Controlled Access: Governance of Human Biodata Repositories and Global Data Sharing
Moderator: Pilar Ossorio, PhD, JD
Presenters: Joy Zhang, PhD, MSc, Keymanthri Moodley, D.Phil, MD
The mechanisms we rely on to legitimate the sharing of human health and genomic data such as controlled access, accreditation and data use agreements; data protection law, de-identification and formal consent are being outpaced by the scale and geopolitics of the transnational genomic research economy. This forum examines two recent episodes that expose their limits: 1) the sale of de-identified data from the UK Biobank on a commercial platform in China after three accredited institutions violated their access agreements and 2) public objection to a multibillion-dollar "data-for-funding" agreement between the US and Kenya proposed to trade healthcare investment for access to de-identified national health data.
These cases raise questions about the governance of global data sharing. Who sets the terms for data sharing, who bears downstream risks and derives benefit, and whose consent or sovereignty is recognized? The panel asks what trustworthy data sharing requires when data moves across borders under conditions of inequality, and what would have to change, in design and in practice, for global health and genomic data sharing to be trustworthy?
https://us06web.zoom.us/j/89098444304?pwd=bFYBPeXi0eCMgOQXCnkNc7kBHkgrWG.1