Regulating genetic engineering guided by human dignity, not genetic essentialism

How might a liberal democratic community best regulate human genetic engineering? Relevant debates widely deploy the usually undefined term “human dignity.” Its indeterminacy in meaning and use renders it useless as a guiding principle. In this article, I reject the human genome as somehow invested with a moral status, a position I call “genetic essentialism.” I explain why a critique of genetic essentialism is not a strawman and argue against defining human rights in terms of genetic essentialism. As an alternative, I propose dignity as the decisional autonomy of future persons, held in trust by the current generation. I show why a future person could be expected to have an interest in decisional autonomy and how popular deliberation, combined with expert medical and bioethical opinion, could generate principled agreement on how the decisional autonomy of future persons might be configured at the point of genetic engineering.

Science fiction authors’ perspectives on human genetic engineering

Participants in the human gene editing debate often consider examples from science fiction but have rarely engaged directly with the science fiction community as stakeholders. To understand how science fiction authors develop and spread their views on gene editing, we created an online questionnaire that was answered by 78 authors, including 71 who had previously written about genetic engineering. When asked which ethical issues science fiction should explore, respondents most frequently mentioned affordability, new social divisions, consent and unforeseen safety risks. They rarely advocated exploring psychological effects or religious objections. When asked which works of fiction had influenced their perceptions of gene editing, the most frequent responses were the film Gattaca, the Star Trek franchise and the novels The Island of Doctor Moreau and Brave New World. Unlike other stakeholders, they rarely cited Frankenstein as an influence. This article examines several differences between bioethicists, the general public and science fiction authors, and discusses how this community’s involvement might benefit proponents and opponents of gene editing. It also provides an overview of works mentioned by our respondents that might serve as useful references in the debate.

Genetic Engineering between Promises and Dilemmas: A Philosophical Debate?

Human genetic engineering can be considered as one of the great transformations brought about by the discoveries of genetics. The possibility of modifying the human genome or carrying out investigations and changes in the hereditary genetic heritage, reveals, simultaneously, promises and dilemmas that go beyond private life, affecting Human Rights. So, based on conflicts of interest related to genetic manipulation techniques, philosophy was sought, especially with the theoretical contribution of Michael Sandel, through a brief bibliographic review, the justifications about support or opposition in proceeding with engineering. Genetics, aiming to understand the positions and interests, to find the best ethical answer to this ambivalence.

The First Barriers in the Human Genetic Engineering Debate

This chapter begins with a brief history of the eugenics debates up until the 1950s, when the human genetic engineering debate emerged. Midcentury genetic scientists wanted to make distinctions between themselves and the now vilified eugenicists, so they created two barriers: the somatic/germline and the disease/enhancement barrier. Above both was “somatic gene therapy,” which became ethically acceptable, and the subject of medical research. The chapter continues by showing how these barriers were weakened over the decades by both a change in our scientific knowledge and the dominant values used in the debate. By the end of the 20th century they remained standing on the slope, albeit in weakened form.

CRISPR: A Revolutionary Technique... For Humans?

CRISPR/Cas9 is a revolutionary technique that carries the possibility of altering the genomic sequence of an organism. Discovered in a bacterial immune system, CRISPR/Cas9 has been a popular topic of discussion since its first publication in 2012. In this essay, the opposing arguments on the use of CRISPR/Cas9 are discussed, based on the practical uses in human genetic engineering. First, the technique is described along with the comparison of other successful gene editing techniques. Secondly, the ethical and clinical implications are also discussed, and the effects of CRISPR use on human germline and somatic cells. This essay aims to answer whether CRISPR/Cas9 should be used to edit the genome of humans?