Improving the justice‐based argument for conducting human gene editing research to cure sickle cell disease

Bioethics 34 (2):200-202 (2019)
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In a recent article, Marilyn Baffoe-Bonnie offers three arguments for conducting CRISPR/Cas9 biotechnology research to cure sickle-cell disease (SCD) based on addressing historical and current injustices in SCD research and care. I show that her second and third arguments suffer from roughly the same defect, which is that they really argue for something else rather than for conducting CRISPR/Cas9 research in particular. For instance, the second argument argues that conducting this gene therapy research would improve the relationship between SCD sufferers (who are mostly of African descent) and health care providers. But really what is essential in improving this relationship is for those providers to genuinely care and be concerned, and this could be lacking even with the CRISPR research being done. Indeed, this relationship could be improved even without that research being done, as long as there is genuine concern. Thus, this argument actually argues for the need for genuine concern. As for the third argument, one (of two) problems arises because it claims that CRISPR research for SCD should be pursued because the benefits would be shared by even non-research-participants, as non-participants would be encouraged. However, this argues for any research for SCD, not for CRISPR research in particular. I conclude that a better justice-based argument will use only Baffoe-Bonnie’s first argument, which is based on historic neglect of an actual cure for SCD (going beyond merely management or transplant therapies).

Author's Profile

Berman Chan
Lanzhou University


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