Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research

Click to increase image sizeClick to decrease image size

This article refers to:

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care

Is It Just for a Screening Program to Give People All the Information They Want?

The Other Side of the Self-Advocacy Coin: How For-Profit Companies Can Divert the Path to Justice in Rare Disease

Ethical, Legal, and Social Implications of Genomics Research: Implications for Building a More Racially Diverse Bioethics Workforce

Critiquing the Critique of Advocacy

Promoting Equality in the Governance of Heritable Human Genome Editing through Ubuntu: Reflecting on a South African Public Engagement Study

The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research

Narrative Equity in Genomic Screening at the Population Level

Bounded Justice, Inclusion, and the Hyper/Invisibility of Race in Precision Medicine

DISCLOSURE STATEMENT

The authors declare financial support from the National Human Genome Research Institute.

ACKNOWLEDGEMENTS

This special issue would not be possible without the support of the National Human Genome Research Institute and its support of the biennial ELSI Congress (Grant number U13HG010830) and the Center for ELSI Resources and Analysis (Grant number U24 HG010733). We are grateful to Editor-in-Chief, David Magnus, Executive Managing Editor Bela Fishbeyn, and the publishers of the American Journal of Bioethics, Rachel H. Lee, and several anonymous reviewers for the opportunity to present this research to the community. We hope the conclusions presented in this issue will stimulate both scholarship and action.

Notes

1 The ELSI Congress was co-directed by Sandra Soo-Jin Lee and Mildred Cho, who convened an organizing committee that included Dounya Alami-Nassif (Columbia University), Paul Appelbaum (Columbia University), Jessica Blanchard (University of Oklahoma), Joy Boyer (NHGRI), Larry Brody (NHGRI), Shawneequa Callier (George Washington University), Mildred Cho (Stanford University), Deanne Dunbar Dolan (Stanford University), Gail Henderson (University of North Carolina), Steven Joffe (University of Pennsylvania), Angelica Johnson (Columbia University), Dave Kaufman (NHGRI), Gabriel Lázaro-Muñoz (Harvard Medical School), Sandra Soo-Jin Lee (Columbia University), Nicole Lockhart (NHGRI), Caroline Moore (Stanford University), Osagie Obasogie (UC Berkeley), Lisa Parker (University of Pittsburgh), Kayte Spector-Bagdady (University of Michigan), Rene Sterling (NHGRI), James Tabery (University of Utah), Wendy Uhlmann (University of Michigan), Emily Van Poetsch (Stanford University), Joe Vitti (Broad/Harvard/MIT), Alexis Walker (Columbia University), Joon-Ho Yu (University of Washington), and Rachel Yarmolinsky (Columbia University).

2 The guest editorial board for this issue included: Jessica Blanchard, Shawneequa Callier, Mildred Cho, Deanne Dunbar Dolan, Gabriel Lázaro-Muñoz, Sandra Soo-Jin Lee, David Magnus, Kayte Spector-Bagdady, James Tabery, and Joon-Ho Yu.

Additional information

Funding

This work was supported by the National Human Genome Research Institute under Grant number [U13HG010830] and Grant number [U24 HG010733].