Environmental considerations in human genomic data governance: overcoming normative challenges

TL;DR

This paper explores how environmental concerns should be integrated into the governance of human genomic data, addressing ethical and practical challenges.

Contribution

The paper introduces five conceptual obstacles to incorporating environmental ethics in genomic data governance and proposes actionable solutions.

Findings

Five key challenges hinder the integration of environmental ethics into genomic data governance.

Environmental considerations should not be ignored in genomic data governance despite these challenges.

Three proposals are suggested to advance environmental ethics in genomic research and data practices.

Abstract

Human genomics involves generating, processing, storing, using and sharing immense amounts of information. This will only increase given efforts to embed whole genome sequencing into mainstream clinical practice. However, as society becomes more conscious about the impact of human activity on the environment, it is imperative to consider what this means for the future of genomic data generation and its governance.

There is scant literature on environmental ethics in the context of genomic data governance. To address this gap, we drew on existing debates and scholarship relating to the environmental impact of biobanking, healthcare generally, and data-intensive healthcare specifically, to construct the strongest conceptual challenges to the proposal that environmental concerns should be incorporated into genomic data governance frameworks. Each challenge was critically examined.

We developed five conceptual obstacles to incorporating environmental considerations in genomic data governance: genomic data optimism; the outcome measurement challenge; the responsibility challenge; the worse offender challenge; and technological idealism. We argue that no objection, when considered individually or together, provides strong enough reasons to ignore or de-prioritise environmental considerations in genomic data governance. We suggest three proposals to move forward with environmental ethics in genomic data governance: research ethics committees should pilot how to consider environmental ethics when assessing and approving genomic research; environmental considerations should be explicitly considered in all prospective genomic data generation; the sector should catalogue low-value practices that can be easily discontinued with minimal disruption.

As a rapidly growing field, the environmental harm from genomic data generation is certain and significant. The relevant question, then, is not whether but how to mitigate the harms without compromising genomics’ potential benefits.