Translational Justice in Human Gene Editing: Bringing End User Engagement and Policy Together
PaSAGE team members Allyse, Meagher, Michie, Isasi, Ormond, Bonhomme, Bombard, Howard, Musunuru, Riggan, and Rubeck co-authored this paper. It was published in the American Journal of Bioethics.
The authors of this paper establish the importance of translational justice. Translational justice can be broken down into two parts; translational means the process of moving clinical technologies from the lab to the patient. Justice means that this process is done in a way that addresses the values and needs of those impacted by the technology. The authors apply this process to human gene editing.
Currently in the United States, there is no central policy maker for reproductive technologies. So, doctors and families decide if a reproductive technology is morally acceptable on a case-by-case basis. This translational process can be unjust; not everybody that needs treatment may have equal access to it.
The authors address who should get a seat at the table where decisions are made about human gene editing. They argue that it is important to invite a diverse group of people. This includes people who have different lived experiences, both across and within genetic conditions. It also includes scientists and doctors who develop gene editing technologies and administer them.
The authors argue that translational justice can only happen if the stakeholders are involved. If we listen to the voices of end-users, policy will better reflect social priorities.