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When Judaism Meets Science
Posts Tagged ‘genetic disorders’
Judaism and the Ethical Challenges of Gene Editing
Credit: National Inst. of Health
Introduction
The manipulation of our genes is a new and rapidly developing process for addressing genetic disorders of the kind we have discussed in “Jews and Genetic Disorders.” What if medical science could develop safe and effective procedures to eliminate variant (or other unwanted) genes from our bodies and replace them with normal (or other more desired, if not objectively better) genes? Engaging with gene-altering technology raises a host of practical questions each and all of which also invoke ethical considerations. A Venn diagram which included areas at least for medical, political, economic, and ethical areas of concern might illustrate the general complexity of the matter, but we need more than a picture to get to the nits and grits of the subject.
Jews may have a unique perspective from which to begin our investigation. We have been talking about health matters for over 2,500 years, and have, based on our religious texts and traditions, and our experience, developed a useful orientation, or, perhaps better, a useful conversation for considering the challenges of human gene editing.
As we have discussed elsewhere with respect to vaccinations, the origin of any Jewish ethical approach has its beginnings at the very start of the Jewish Peoples’ origin story. We don’t have to go all the way back to the pre-creation state of chaos, just to the first report of the creation of humankind. There we are told that humans were created by a Supreme Being and made b’tzelem Elohim, in God’s own image. (Gen. 1:27.) Rabbi Danny Nevins, of the Jewish Theological Seminary, acknowledges that this phrase is ambiguous. Moving beyond any notion of physical similarity, though, Rabbi Nevins holds that it at least “implies that humanity has God-like qualities and therefore great responsibilities.”
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Jews and Genetic Disorders
Credit: ‘EM Unit, UCL Medical School, Royal Free Campus’. Wellcome Images
Introduction
Victoria Gray, a Black American woman now in her mid-thirties, was just three months old when she suffered her first painful bout with sickle cell disease (SCD), a debilitating genetic blood disorder. SCD is caused by a mutation of the hemoglobin-beta (HBB) gene in chromosome 11 that alters the shape of normally flexible, round red blood cells into rigid, crescent shaped cells. When it does, the flow of red blood cells that usually deliver oxygen to bodily tissues is restricted resulting in limited oxygen delivery to tissues and associated severe pain. Until recently, treatment consisted primarily of strong pain relief medication and, also, frequent blood transfusions. SCD affects about 100,000 people in the United States, more than 90% of whom are African-American or non-Hispanic Black, and millions more worldwide.
In 2019, Ms. Gray became the first patient with any form of genetic disease to be treated by gene-editing technology known as CRISPR which modified blood cells taken from her bone marrow for subsequent infusion back into her body. Two years later, she was not only pain free, but doing well enough to no longer be part of the landmark study for which she volunteered, although she will continue to be followed for fifteen more years in order to check the long-term safety and efficacy of her treatment.
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