Genome-Edited Persons will Need Legal Protections

Will Hatfield suggests that, in Canada, persons born from gametes or embryos that have been genetically modified would be members of a new class of humans, and potentially in need of specific legal protections.

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Canadian law places special emphasis on the protection of individuals from discriminatory practices. This protection is entrenched in the Canadian Charter of Rights and Freedoms, 1982 as well as other legislation such as the Canada Human Rights Act, 1977. These laws provide legal protections to protected classes demarked by religion, gender, sexual orientation and so on. Protected classes are typically defined in relation to characteristics that are not of one’s choosing. The law recognizes the importance of these defining characteristics and seeks to prevent discrimination based on them.

In light of the recent birth of the world’s first genome-edited babies, twin girls Lulu and Nana, it is timely to consider whether current legal protections in Canada would adequately protect the interests of humans born of germline genome editing.

I can imagine many situations in which this new class of humans may need special legal protections, and I discuss two of these situations below. The first concerns privacy and the second concerns discrimination in the workplace.

Photo: https://pixabay.com/en/clause-paragraph-right-blood-dna-370933/, Image description: The image of a blue DNA strand on blood cells.

First, it is recommended that persons born of genome editing be subject to long-term follow-up. This recommendation confers a particular sort of vulnerability on this new class of humans who may not want a lifetime of research participation. Persons born from gametes or embryos that have been genetically modified may wish to opt out of such long-term follow-up. Will the scientific community implicated respect these wishes and allow their research to go unfinished? Laws regulating the privacy of individual health care information currently exist and so it seems as if this new class of human will be legally protected from coerced research participation. However, because these laws clearly were not originally written with genome-edited individuals in mind it is possible that these legal protections may not adequately cover the type of case I have described.

Second, it is widely assumed that persons born of germline genome editing will be advantaged in some way by their genetic alterations. For example, they might have an enhanced memory, or a greater capacity to quickly learn new skills. In such cases, genome-edited persons might be perceived as “advantaged,” which could foster resentment and discrimination, subconscious or otherwise, against this advantaged class. But the opposite may also be true (perhaps enhanced memory comes at the cost of a decrease in ability to retain focus) and as such genome-edited individuals may also experience discrimination. Consider, for example, an employment situation where a genome-edited individual and a non-genome-edited individual compete for the same job. What factors might the manager consider in deciding which individual to hire? Would it be wise to hire an individual from this new class of genome-edited individuals who may prove “defective”, or would it be more prudent to stick with what is familiar and preferentially hire non-genome-edited individuals?

In Canada, the Genetic Non-Discrimination Act, 2017 provides some protection against genetic discrimination in the workplace. An employer cannot require an individual to take a genetic test to determine their genetic profile, and an employer cannot fire an individual on the basis of their genetic profile. Will these protections extend to this new edited class? If so, how might the protections be operationalized? More importantly, are these existing protections enough to ensure that edited individuals enjoy as much legal protection as their non-edited counterparts?

Genome-edited individuals have become a reality and as a result, the world has entered a new era. This new era requires that we think more carefully and in new ways about the type of legal protections that might be required or beneficial for this group, as well as about the laws that govern the interactions between edited and non-edited humans.

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Will Hatfield is a first year law student at the Schulich School of Law at Dalhousie University.