Oldal 356 [356]
OCR
JUDIT SÁNDOR use of medical technology, while 2796 of the respondents say this would be taking technology too far. Itis an even more complex moral question what constitutes an editable genetic anomaly. For instance, there are autistic individuals in the upper spectrum with exceptional mathematical creativity. An artist might suffer from several mood disorders, but in some ways, this is what feeds their artistic creativity. It can be concluded that neurodiversity is also an important value. Genome research and gene editing raise numerous ethical, legal and social questions, many of which — including privacy issues, informed consent and the equitable representation of participants — are still unsolved. Furthermore, the availability and open distribution of genomic data is still uneven. In 2018 The Nuffield Council’s 205-page-long report reflected on the social and ethical issues related to genome editing in a more venturous way than any previously published ethical or legal statements.** By 2019 almost all relevant international organizations and professional societies issued a statement or a declaration on genome editing. In September 2020, the American National Academy of Medicine and the Royal Society of Great Britain published a report entitled Heritable Human Genome Editing (HHGE).”° The HHGE Report does not recommend a moratorium on research. Instead, it clearly delineates six categories of potential clinical applications of HHGE and indicates that only two of those could be considered today. HHGE may be applied initially for only the most severe monogenic diseases and in a limited number of situations. I think in the future, indeed the sharp distinction between the somatic and germ line editing should be revisited. 23 Cary Funk — Meg Hefferon, Public Views of Gene Editing for Babies Depend on How It Would Be Used, Pew Research Center (26 July 2018), https://www.pewresearch.org/ science/2018/07/26/public-views-of-gene-editing-for-babies-depend-on-how-it-would-beused/. 24 The report includes the discussion of various ethical issues that arise in relation to the prospect of genome editing becoming available as a reproductive option for prospective parents. °5 National Academy of Medicine, National Academy of Sciences, and the Royal Society, Heritable Human Genome Editing, Washington, DC., The National Academies Press, 2020, https://www.nap.edu/catalog/25665/heritable-human-genome-editing. + 354 +
