RESOLVING NETTLESOME HEALTH POLICY DISPUTES

Controversies often are involved when initiatives are undertaken to arrive at the best approach to gaining wide acceptance of proposals involving contentious public policy issues, such as gene editing, euthanasia/assisted dying, and recreational use of marijuana products. A basic question pertains to deciding whom to involve in making decisions that enable these policies to move forward. Three possible groups are: elected public officials; health scientists and other experts in fields, such as ethics; and voters, along with other concerned members of the general public.

To note just one example, President William Clinton, along with British Prime Minister Tony Blair, announced at the White House on June 26, 2000 that the international Human Genome Project and Celera Genomics Corporation both had completed an initial sequencing of the human genome, the genetic blueprint for human beings. This landmark achievement was hailed as promising to bring exciting new approaches to prevent, diagnose, treat, and cure disease. Since that widely heralded occasion, germline gene editing provides a vivid illustration of a current topic that has emerged as a serious concern because of its potentially grave threat to the health of future generations.

Netflix offered a four-episode documentary series in October 2019 entitled “unnatural selection” as a means of furnishing an overview of genetic engineering, with an emphasis on the DNA-editing technology of CRISPR (clustered regularly interspaced short palindromic repeats) from the perspective of scientists, corporations, the public, and biohackers tinkering in garages. Apart from the goal of editing genes to eradicate certain diseases or even to produce so-called designer babies who will possess enhanced abilities (e.g, intellectual, artistic, and athletic), it should be obvious that there are great amounts of money to be made by entrepreneurs able to reach the finish line first with the most effective products.

The problem currently is that: some envisioned new gene therapies may not improve human lives, various species may be at risk of changing in unforeseen ways or perhaps even being eliminated, and assurance still is lacking on whether desired sought after improvements ever will materialize. The Netflix episodes feature discussions with (1) residents of Nantucket Island in Massachusetts who are apprised of a proposal to modify a species of mice affected by ticks that cause disease among humans, (2) inhabitants of New Zealand where rats are killing off many breeds of birds, and (3) villagers in Burkina Faso, Africa where mosquitos continue to cause children to die from malaria.

In all three settings, the notion of Gene Drive to change an entire species to achieve a purported social good encounters resistance. A major concern is that apart from positive outcomes that are touted by proponents of genetic interventions, it remains worrisome that no firm guarantees can be offered regarding possible unanticipated, dangerous outcomes that might occur. While members of the general public may lack the sophisticated knowledge of scientific experts, their basic instincts make them wary of approving proposals that are equivalent to attempting to play God.

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