The He Jiankui Affair: A CRISPR Ethics Case Study Exploring the Scientific, Ethical, and Legal Fallout of Human Germline Editing Presenter: $$ Your Name $$ Affiliation: IISER Berhampur Date: $$ Insert Date $$
Executive Summary (The Core Issue) A Deliberate Violation: Redrawing the Line - The He Jiankui case was a deliberate violation of global scientific and ethical consensus on human germline editing. - This case is a critical inflection point, forcing global bodies, scientists, and the public to define explicit red lines and establish concrete regulatory frameworks.
Introduction: What is Germline Editing? - CRISPR-Cas9: A precise tool to target and edit DNA. - Somatic: Non-heritable edits (e.g., curing cancer). - Germline: Heritable edits passed to future generations.
Background: Who is He Jiankui? - Associate Professor at SUSTech (Shenzhen, China). - Ph.D. (Rice University), Post-doc (Stanford University). - Educated, ambitious, with strong Western ties.
Genesis of the Experiment - Recruited HIV-discordant couples (Father HIV+, Mother HIV-). - Goal: Edit CCR5 gene to confer resistance to HIV. - Preventative and heritable.
The Claimed Outcome - November 2018: Announcement at Hong Kong Summit. - Lulu and Nana (2018), Amy (2019). - Claimed 'HIV resistance'.
Scientific Flaws in the Experiment - Mosaicism: Incomplete edits. - Novel mutations: Uncharacterized, harmful variants. - No medical need: HIV prevention already possible.
Major Ethical & Research Violations - Forged ethics approval. - Misleading informed consent. - Exploitation of vulnerable couples. - Violated global moratorium.
International and Scientific Community Reaction - Immediate condemnation by WHO, NASEM, and others. - Strong response from Chinese authorities.
Legal Consequences for He and Collaborators - Fired by SUSTech, suspended research. - Dec 2019: Convicted of illegal medical practice. - Sentences: He (3 yrs, 3M yuan fine), others fined/imprisoned. - Released April 2022.
Fate of the Children - Lulu, Nana, Amy under medical supervision. - Unknowns: mosaicism, long-term health, psychological impact. - Ethical obligation: lifelong follow-up care.
Regulatory & Policy Response - China: Rapid legal reforms, stricter penalties. - Global: WHO guidelines, calls for international moratorium.
Impact on Science and Public Trust - Chilling effect: slowed legitimate research. - Positive: stronger IRBs, public engagement. - Trust damaged; transparency emphasized.
Lessons Learned - Safety and necessity first. - Broad public and international consensus required. - Science must prioritize ethics over ambition.
Ongoing Legacy: Where is He Jiankui Now? - Released April 2022, started new lab in Beijing. - Focus on affordable rare-disease gene therapies. - Facing global skepticism.
Broader Ethical Questions - Should germline editing ever be allowed? - Who decides: scientists, governments, or citizens? - How to prevent ethical dumping globally?
Discussion Questions - Could He's experiment be justified if flawless? - Who should regulate: governments or scientists? - Role of emerging nations in global dialogue?