News

Honors

  • Sandra Soo-Jin Lee, PhD Appointed to SACHRP: The Secretary of the Department of Health and Human Services (DHHS) has appointed Dr. Sandra Soo-Jin Lee to the Secretary’s Advisory Committee on Human Research Protections (SACHRP). SACHRP provides expert advice and recommendations on issues pertaining to the protection of human subjects in research. In addition to becoming a voting member of the full committee, Dr. Lee will serve on the SACHRP subcommittee on harmonization that will address issues related to justice, engagement, and artificial intelligence.
  • Maya Sabatello, LLB, PhD, will serve as co-Chair (with Greta M. Goto, MBA) of NHGRI’s Community Engagement in Genomics Working Group, a Working Group of the National Advisory Council for Human Genome Research. The Working Group aims to engage communities to facilitate NHGRI's understanding of community perspectives and needs about genomics, engage and educate diverse communities about genomics, and inform the leadership of NHGRI of issues relevant to its portfolio of genomics research and related programs.

New Resources

 Two New ELSIhub Collections from the Center for ELSI Resources and Analysis.  CERA's content series, ELSIhub Collections, are essential reading lists on emerging topics in ELSI, curated by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers, trainees, and all scholars with an interest in ELSI research.


New Publication


Projects & Grants

  • Leveraging Tumor Registries & Pathology Specimens to Facilitate Genetic Testing & Traceback for Ovarian Cancer (NCI: 5U01CA244323-02).  PI: Jessica Ezzell Hunter, PhD; Site PI: Sandra Soo-Jin Lee, PhD.  Our multidisciplinary team marshals expertise in bioethics, genetic epidemiology, genomic medicine, biostatistics, health communication, and medical genetics to address the ethical, regulatory, and scientific challenges to address challenges in applying a traceback testing approach to retrospectively identify women who have a prior diagnosis of ovarian cancer. This study generates evidence on the feasibility of traceback testing using tumor registries and archived pathology samples that are critically important to guide the future implementation of such programs beyond ovarian cancer... (read more)

Invitation to TraineeHub

  • TraineeHub is an online community of students, trainees and early career scholars with an interest in ELSI research – for those new to "ELSI" it is shorthand for research in the ethical, legal and social implications of developments in genomics and genetics. Whether you are a fellow in a STEM or clinical program, a graduate student in Public Health, training as a genetic counselor, or studying bioinformatics, we welcome you to join!   (read more)

 


Newletters and News Archive

May 2021

May 2021 Newsletter

Honors

  • Sandra Soo-Jin Lee, PhD Appointed to SACHRP: The Secretary of the Department of Health and Human Services (DHHS) has appointed Dr. Sandra Soo-Jin Lee to the Secretary’s Advisory Committee on Human Research Protections (SACHRP). SACHRP provides expert advice and recommendations on issues pertaining to the protection of human subjects in research. In addition to becoming a voting member of the full committee, Dr. Lee will serve on the SACHRP subcommittee on harmonization that will address issues related to justice, engagement, and artificial intelligence.
  • Maya Sabatello, LLB, PhD, will serve as co-Chair (with Greta M. Goto, MBA) of NHGRI’s Community Engagement in Genomics Working Group, a Working Group of the National Advisory Council for Human Genome Research. The Working Group aims to engage communities to facilitate NHGRI's understanding of community perspectives and needs about genomics, engage and educate diverse communities about genomics, and inform the leadership of NHGRI of issues relevant to its portfolio of genomics research and related programs.

New Resources

 Two New ELSIhub Collections from the Center for ELSI Resources and Analysis.  CERA's content series, ELSIhub Collections, are essential reading lists on emerging topics in ELSI, curated by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers, trainees, and all scholars with an interest in ELSI research.

New Publication

Projects & Grants

  • Leveraging Tumor Registries & Pathology Specimens to Facilitate Genetic Testing & Traceback for Ovarian Cancer (NCI: 5U01CA244323-02).  PI: Jessica Ezzell Hunter, PhD; Site PI: Sandra Soo-Jin Lee, PhD.  Our multidisciplinary team marshals expertise in bioethics, genetic epidemiology, genomic medicine, biostatistics, health communication, and medical genetics to address the ethical, regulatory, and scientific challenges to address challenges in applying a traceback testing approach to retrospectively identify women who have a prior diagnosis of ovarian cancer. This study generates evidence on the feasibility of traceback testing using tumor registries and archived pathology samples that are critically important to guide the future implementation of such programs beyond ovarian cancer... (read more)

Invitation to TraineeHub

TraineeHub is an online community of students, trainees and early career scholars with an interest in ELSI research – for those new to "ELSI" it is shorthand for research in the ethical, legal and social implications of developments in genomics and genetics. Whether you are a fellow in a STEM or clinical program, a graduate student in Public Health, training as a genetic counselor, or studying bioinformatics, we welcome you to join!   (read more)  

April 2021

April 2021 Newsletter

New Resources

  • Introducing ELSIhub Collections from the Center for ELSI Resources and Analysis.  CERA's newly launched content series, ELSIhub Collections, are essential reading lists on emerging topics in ELSI, curated by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers, trainees, and all scholars with an interest in ELSI research. Read the first in series: Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Diseases, edited by Debra Mathews, PhD, MA, Assistant Director for Science Programs at the Berman Institute of Bioethics and Associate Professor of Genetic Medicine at Johns Hopkins University and Sheethal Jose, a PhD Student in Bioethics and Health Policy, also at the Johns Hopkins Berman Institute of Bioethics and the Bloomberg School of Public Health. 
  • Introducing ELSIconversations
    ELSIconversations presents a series of six themed one-hour networking discussions on ELSI research. Please join us 12:00-1:00 pm ET starting Friday, February 26. This initial series of discussions focuses on presentations that were originally accepted for the canceled 2020 ELSI Congress and are now available as 15-minute videos. The presenters will answer questions about their research and take part in an open discussion with all attendees.  Please bring your questions, join the discussion, and expect to network with your colleagues. We hope you will make new connections and start new conversations on ELSI research!

    The schedule of the talks and a link to each video are available here. Please register for each ELSIconversations event you would like to attend. Contact us at info@elsihub.org with any questions. 

New Publications

Projects & Grants

  • Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues (R00HG010499).  Principal Investigator: Alexis Walker, PhD.  This R00 Award investigates approaches to social and ethical issues within the private sector genomics industry in the US, examining stakeholder perspectives on pathways towards equitable and just outcomes for the field. It does so through methods for both descriptive and normative ethics as well as stakeholder engagement. This includes an investigation of how members of the private sector genomics industry think and talk about the ethical and social dynamics of their work, using interview, survey, and observational methods... (read more)
  • Evidence-based Policy Recommendations to Address Bioethical Challenges in the Return of Genetic Results in Nephrology (3U01DK100876-08S1). PI: Ali Gharavi, MD; MPI: Maya Sabatello, LLB, PhD.  The return of individual genetic results in nephrology is key for translational genomic efforts to promote patients’ clinical care, but its success hinges largely on the ability of nephrologists and nephrology researchers to implement and facilitate the process. However, no clear policies currently exist about return of genetic results in nephrology research, and no study to date has explored the ethical and practical challenges nephrologists experience in this process. The supplement collaborates with CureGN, a 70-sites consortium dedicated to the return of genetic results for rare renal disorders, and national organizations devoted to cure heritable renal diseases, to investigate the experiences of nephrology healthcare providers in returning genetic results from research... (read more)

Call for Papers

March 2021

February 2021

February 2021 Newsletter

New Resources

  • Introducing ELSIhub Collections from the Center for ELSI Resources and Analysis.  CERA's newly launched content series, ELSIhub Collections, are essential reading lists on emerging topics in ELSI, curated by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers, trainees, and all scholars with an interest in ELSI research. Read the first in series: Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Diseases, edited by Debra Mathews, PhD, MA, Assistant Director for Science Programs at the Berman Institute of Bioethics and Associate Professor of Genetic Medicine at Johns Hopkins University and Sheethal Jose, a PhD Student in Bioethics and Health Policy, also at the Johns Hopkins Berman Institute of Bioethics and the Bloomberg School of Public Health. 
  • Introducing ELSIconversations
    ELSIconversations presents a series of six themed one-hour networking discussions on ELSI research. Please join us 12:00-1:00 pm ET starting Friday, February 26. This initial series of discussions focuses on presentations that were originally accepted for the canceled 2020 ELSI Congress and are now available as 15-minute videos. The presenters will answer questions about their research and take part in an open discussion with all attendees.  Please bring your questions, join the discussion, and expect to network with your colleagues. We hope you will make new connections and start new conversations on ELSI research!

    The schedule of the talks and a link to each video are available here. Please register for each ELSIconversations event you would like to attend. Contact us at info@elsihub.org with any questions. 

New Publications

Projects & Grants

  • Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues (R00HG010499).  Principal Investigator: Alexis Walker, PhD.  This R00 Award investigates approaches to social and ethical issues within the private sector genomics industry in the US, examining stakeholder perspectives on pathways towards equitable and just outcomes for the field. It does so through methods for both descriptive and normative ethics as well as stakeholder engagement. This includes an investigation of how members of the private sector genomics industry think and talk about the ethical and social dynamics of their work, using interview, survey, and observational methods... (read more)
  • Evidence-based Policy Recommendations to Address Bioethical Challenges in the Return of Genetic Results in Nephrology (3U01DK100876-08S1). PI: Ali Gharavi, MD; MPI: Maya Sabatello, LLB, PhD.  The return of individual genetic results in nephrology is key for translational genomic efforts to promote patients’ clinical care, but its success hinges largely on the ability of nephrologists and nephrology researchers to implement and facilitate the process. However, no clear policies currently exist about return of genetic results in nephrology research, and no study to date has explored the ethical and practical challenges nephrologists experience in this process. The supplement collaborates with CureGN, a 70-sites consortium dedicated to the return of genetic results for rare renal disorders, and national organizations devoted to cure heritable renal diseases, to investigate the experiences of nephrology healthcare providers in returning genetic results from research... (read more)

January 2021

January 2021 Newsletter

Faculty & Staff

  • A warm welcome to our newest faculty member, Alexis Walker, PhD, who joined the division on January 1, 2021 as an Assistant Professor in the Department of Medical Humanities and Ethics. Get acquainted with Dr. Walker by reading her New Faculty Q&A (read more)

In the Media

  • The Bioethics of Genomics and Justice in Columbia Medicine, VP&S Annual Report 2019-2020, features ethics division research into the ethical, legal, and social implications of precision medicine. "The 360-degree perspective includes “studying the studies” as researchers continue to unleash the power to treat, prevent, and cure disease. The effort also provides an opportunity to bring social science to bear on bioethical questions." (read the article)

  • Racial Injustice in U.S. Health Care Calls for a Truth and Reconciliation Commission, Bioethicist Says, in Columbia News, January 12, 2021. Dr. Maya Sabatello, "an expert on human rights and the ethical, legal, and social implications of genetics, proposes a COVID-19 Truth and Reconciliation Commission. “These commissions began as a way to help authoritarian governments recover from their abusive pasts and transition toward democracy without being punitive,” Sabatello says. “The United States may not be a fragile democracy, but our health care system—who controls it, who benefits from it—resembles an autocratic regime.”" (read the article)

Awards & Honors

Call for Papers

  • The British Journal of Clinical Pharmacology (BJCP) has issued a call for papers for a clinical pharmacology-flavoured medical humanities section.  The call is for poetry, essays, editorials or commentaries on personal experience, multimedia art, culture, literature, history, anthropology, sociology, political science, ethics, or philosophy, which highlight the multifaceted interactions between clinical pharmacology and society.  (read more)
  • Michele Goodwin (UCI Law) and Holly Fernandez Lynch (U Penn SOM) are co-editing a special issue of the Journal of Law, Medicine, and Ethics on Health Law and Antiracism. Paper proposals are due February 15. (read more)
  •  ASLME is launching an antiracism student writing competition open to grad students in any field. Submissions are due June 1, which means that this is a good time for students to select relevant paper topics for this term’s seminars. (read more)
  •  The ASLME Health Law Professors Conference announcement was just posted and there will be a health law and antiracism track. Proposals are due February 14 and the conference is June 9-11. (read more)
  • The Journal of Pediatrics is soliciting manuscripts for REACH: Reflections on Ethics and Advocacy in Child Health, a new quarterly section focused on ethical controversies in pediatric health, broadly understood to include clinical care, research, and the social determinants of health. Abstracts due January 29. (read more)

Projects & Grants

  • Drs. Sandra Soo-Jin Lee and Noemie Elhadad (in the Department of Biomedical Informatics) were named Columbia Collaboratory Fellows. As Fellows, Drs. Lee and Elhadad received a Collaboratory Grant that provides up to $150,000 over three years to support the development and teaching of a new multi-disciplinary course: Interrogating Ethics and Justice in Digital Health(read more)
  • Dr. Maya Sabatello has received a new four-year grant from NHGRI and NIH’s Office of the Director (OD) entitled “Disability, Diversity and Trust in Precision Medicine Research: Stakeholders Engagement” (1R01HG010868). People with disabilities comprise the largest health disparities group in the US. Their inclusion in precision medicine research is essential for health benefits to accrue to them and for upholding social justice by treating people with disabilities as equal members of society... (read more)

December 2020

December 2020 Newsletter

Faculty & Staff

  • The division expanded in September to welcome new Administration staff Angelica Johnson, MS and Jon Zaikowski, MS, and new Research Associate, Jessica Martucci, PhD, MBE.
  • A warm welcome to new faculty Maya Sabatello, LLB, PhD who joined the division in December with a joint appointment as Associate Professor for Medical Sciences in the Departments of Medicine and Medical Humanities and Ethics.

(Read more about each new division member at Our Team.)

Awards & Honors

  • Emily Vasquez, MPH, PhD(c) was awarded the Rudolf Virchow Award from the Society for Medical Anthropology’s Critical Anthropology for Global Health special interest group for her paper "Detecting diabetes risk: Philanthropy, technology, and epistemic power in Mexico." (Read more)

Projects & Grants

  • Dr. Jessica Martucci, along with colleague Britt Dahlberg, is the recipient of funding from the National Council on Public History and Villanova University’s LePage Center for History in the Public Interest for a new oral history and archival-based public medical humanities project entitled Beyond Better. (Read more)
  • The Ethics of Inclusion team led by Dr. Sandra Soo-Jin Lee was awarded a new NIH bioethics supplement for the study "Understanding the Expectations and Needs of Diverse Communities for Navigating Research Results (3R01 HG010330-04S1)." The study includes David Goldstein, Ph.D, Louise Bier, MS, CGC, Alejandra Aguirre, DrPH, MPH, and Sonia Mendoza-Grey, MPH. The project aims to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care. (Read more)
  • In a new collaboration, Dr. Sandra Soo-Jin Lee will work with Emily Wang, MD at Yale and the SEICHE Center for Health and Justice and Lauren Brinkley-Rubenstein, PhD in the Department of Social Medicine at the University of North Carolina, Chapel Hill, on the study “COVID-19 Testing and Prevention in Correctional Settings.” The study is funded by the NIH Rapid Acceleration of Diagnostics for Underserved Populations (RADxUP) Program and addresses the disproportionately high rates of COVID-19 infection and mortality in correctional facilities. (Read more)