The right to science and human germline editing

In a recently published article titled “The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act”, Santa Slokenberga and Heidi Carmen Howard argue this right to science should also include protection against scientific advancements with destructive implications for humans, their rights and humanity.

Regulating human germline editing is not a straightforward matter. It raises questions about who has the competence to govern science, and who has the authority to do so. Several actors have contributed to shaping the legal frameworks applicable to human germline governing as it stands today. Still, human germline governance is not uniform and comprehensive. More strong, international voices are needed to protect the genetic integrity of individuals and humanity as a whole from the misuse of science advances.

Safeguarding the genetic integrity of individuals and humanity is not an easy task. National legal approaches attempt to regulate the human germline and protecting humans from destructive implications of this technology. However, as the case of Sweden demonstrates, these approaches might not necessarily be able to tackle advances in gene editing technologies, and risks emerge. Santa Slokenberga and Heidi Carmen Howard in an article recently published in Förvaltningsrättslig tidskrift argue that if one case falls through the gaps in the law, that case is one too many.

Contrary to other scholars, the authors suggest that when deficiencies in national law put humanity at stake, attempts at filling the gaps might not be sufficient. Instead, they suggest revisiting the legal framework, and leaving no gaps for cases to slip through.

In Sweden, interventions in the human germline are regulated under the Swedish Genetic Integrity Act (Lag (2006:351) om genetisk integritet m.m.). However, since 2006, great strides have been made in genomics. Many of the resulting experiments and clinical procedures that these technologies currently enable were mere science fiction when the Genetic Integrity Act was drafted. With the passing of time and advances in technology, the genetic integrity Sweden set out to safeguard in its national jurisdiction is at risk.

Although the article is a deep dive in Sweden’s legal framework on genetics, the issues raised are not unique to Sweden. Outdated regulation is something all nations have to deal with, especially for state-of-the-art technology where there is a lack of knowledge about associated ethical, legal and social issues, alongside outstanding concerns about their technical performances. Immediate action is necessary to ensure that what one law cannot catch is effectively caught by another. This is true for all countries.

(Image removed) Santa Slokenberga, LLD

“Taking human germline seriously means establishing clear opportunities for further work to examine technological advances from ethical, legal and social perspectives. And revisiting germline editing and national legislation when, if ever, human germline editing is acceptable,” says Santa Slokenberga, one of the authors.

After examining these issues, the authors argue that findings should be shared with the broader community. Bringing them all the way to EU law and policy makers, and the Council of Europe. This furthers the regulatory dialogue between the national and European level, and opens up to strengthening existing regulatory approaches or paving the way to revisit them.

This paper is more than scrutiny of Swedish regulation. It is also a contribution to the ongoing international debate on the right to enjoy the benefits of the scientific process and its applications. 

By Anna Holm & Santa Slokenberga

The paper is published in Förvaltningsrättslig tidskrift: Slokenberga S & Howard HC, The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act, Förvaltningsrättslig Tidskrift, 2019;2:199-222.