Do we have a right to an unmanipulated genome? The human genome as the common heritage of mankind

Abstract

The human genome is commonly regarded as a ‘natural’ connection between all human beings, as it has been handed down to us by our predecessors. As such, it is believed to represent common heritage of humanity, e.g. a resource of outstanding value that should be the object of special protection and international concern. Some critics argue that germline manipulation would disrupt this natural heritage and that we have a duty to preserve the integrity of the human germline. However, a closer look reveals that the concept of common heritage of humanity does not necessarily imply the impermissibility of germline manipulation. If it is restricted to the prevention of severe diseases, germline manipulation does not represent a threat to the unity and identity of the human species, even though this would create a new form of relationship between human beings, namely that between a designer and a genetically designed person.

On human genome manipulation and Homo technicus: the legal treatment of non-natural human subjects

“…The ultimate basis for a refusal to modify one's form, realistically, should not rely upon secular or spiritual arguments; nor should they be dependent upon some notion of individual bodily ownership-contrary to what other scholars have drafted on the subject [35,36]. Instead, refusal should be based upon the responsibility thrust upon those who willingly modify themselves.…”

“…Similarly, the qualification that one's genetic material be naturally manipulated runs into complications when GeMa and GT enter into the fold. A patient who has their CD34+ hematopoietic stem and progenitor cells undergo myeloablation 13 to combat the detrimental effects of sickle cell anaemia or β-thalassemia and sees a change from "impaired" bone marrow to "healthy" forms [13,40] will not be viewed in the same way as an embryoblast that has its alleles screened by ACIS or manipulated for "preferred" traits [12,28,32,35]. Similarly, there is not a simple way to categorise a retinal implant from allele or gene-sequence selection in GeMa and GT for (relatively) non-impaired sight, given that one's "natural" genetic makeup is being interfered with at some level.…”

“…These notions may further be construed as "appropriate" because they are assumed to be donated with consent-whereas embryoblasts display the potential for new life (or rather, a unique individual able to make determinations about their body) and cannot provide such consent, as they lack the cognitive capacity to make such decisions. To be clear, these are but anecdotal observations that are detached from the larger academic conversation taking place on the use of embryoblasts in medical research as opposed to donated organs and tissues-among other related topics [6,9,12,28,35,36]-and only present a small level of the bioethical complications of "natural" human definitions in this sphere.…”

“…Although this may not be the "easiest" way to distinguish a less-enhanced human from a relatively unenhanced human, it at least establishes the notion that the presence of non-biological or computational material within or upon the human form serves as the baseline for a visual representation of "enhanced" human groups. This author would further advocate for a right or social agreement that all humans retain the ability to remain technologically unmanipulated concerning genetic material [6,35,36], as well as maintaining the ability to self-regulate one's neurological or psychological state insofar as it does not cause harm to other members of society [39]. Of course, this extends to the ability to refuse technological integration into one's form [6,35,36].…”

Quaderns de filosofia VII, 2

“…En el primer caso, enfatizamos los problemas de los beneficios y de la justicia distributiva. En el segundo, el sentido normativo y la protección del genoma (Primc 2020). En cuanto a las estrategias nacionales, Islandia permitió a sus ciudadanos el acceso a los datos genéticos, pero Japón protegió los datos de los suyos (Reardon 2017, 70-93, 94-119).…”