This document summarizes the history and ethics of germline genome editing. It notes that in the 1970s, reproductive genetic technologies emerged, allowing for embryo selection. In the 1990s, international agreements prohibited human germline modification. However, the advent of CRISPR/Cas9 reinvigorated this debate by making genetic editing cheaper and easier. The document observes that while safety and consent issues are often raised, proponents argue that it could relieve suffering and that the difference between embryo selection and modification may be one of degree, not kind. It concludes that instead of taking a simplistic "for or against" stance, the discussion should focus on governance, inclusion, and ensuring germline editing promotes important

1. Ethics of germline genome editing:
a very short history
Dr A.L. (Annelien) Bredenoord
University Medical Center Utrecht
Department of Medical Humanities
The Netherlands

2. Declaration of
conflict of interest
Type Company
- University Medical Center Utrecht
- Member Dutch Senate (First Chamber)
UMC Utrecht
Democrats66
Research Grants from
- Dutch Cancer Society KWF
- Dutch Organisation for Health Research and Development ZonMw
KWF / ZonMw
Other research support None
Speakers Bureau / Honoraria None
Ownership interest (stock, stock-options, patent or intellectual property None
Consultant / advisory board None

3. 1970s: two developments

4. 1970s: two developments

5. Reproductive genetic technology
Step 1 Step 2

6. Many ethical questions!
Reproductive genetic technology

7. Germline modification
Genetic modification that is passed on the child, and the child’s
children, and the great grantchild’s children, etc

9. Oviedo Convention (1997)

10. Dutvch Embryo Law

11. CRISPR/Cas9

13. Ethics of germline genome editing: three observations

16. September 2015 http://www.hinxtongroup.org

19. Observation 1: what’s new?
• “It is against the moral status of the
human embryo”
• “It is unnatural”
• “It is playing God”
• “We will lose genetic diversity”
• “It is against people with disabilities”
• “It leads to a slippery slope towards
enhancement”
• “There are alternatives”
• “The children are not able to give
consent”
• “It is too risky”

20. Observation 1: what’s new?
• “It is part of reproductive autonomy”
• “It will provide people with healthy, genetically related children”
• “It will relieve human suffering and prevent serious disease”
• “No option argument”
• “Scientific freedom”

21. Embryo selection
• Limited amount of embryos
• Genetic material of
providers gametes
• Affected embryos are
discarded
Embryo modification
• Simultaneously modify
several variants: slippery
slope?
• More risky
• More in line with goals of
medicine
• Does a difference in degree
make a difference in kind?
Observation 2: what is new?

22. Observation 3: governance 2.0

26. Germline modification is on the horizon
‘Are you in favor or against germline genome editing’ > wrong ethical question
o What can we learn from earlier reprogenetic technologies?
o How can we organize an inclusive, prudent process?
o How can scientists engage with broader publics?
o What are appropriate indications for germline modification?
o How can we avoid premature and/or unregulated use?
o (How) can we introduce genome editing in such a way that it promotes
important values such as the relief of suffering, equity, respect for diversity
and reproductive autonomy?

27. Thank you
Dr A.L. (Annelien) Bredenoord
University Medical Center Utrecht
The Netherlands
A.L.Bredenoord@umcutrecht.nl