By Thomas H. Murray, PhD
In 1982, when I wrote my first ethics column for Genetic Engineering News, enthusiasm for genetic engineering’s potential to remake medicine, manufacturing, and agriculture was set against grave concerns for the perils critics feared it might create. By 1986, I had written 28 columns on ethics and genetic engineering for GEN, with a bonus 29th five years later on the landmark case of Moore v. Regents of the University of California.
Some of the issues addressed in those columns now look like historical curiosities, I suspect. They were not so at the time; instead, they were the subjects of furious debates and academic quarrels with vital consequences for public policy, the economy, and the future of genetic engineering and biotechnology. The U.S. Congress and other public bodies launched hearings and other efforts to sort out the ethical issues that came with our rapidly increasing power to manipulate DNA. In that era, I gave invited testimony seven times before the U.S. House of Representatives and three times for the U.S. Senate, along with working on four reports for the U.S. Congress’s Office of Technology Assessment.
Unsurprisingly, the ethical issues that interested the readers of GEN—or, at least, the issues I wrote about—paralleled those the Senate and Congress thought worth their attention: The values at stake when industry develops stronger ties with universities and researchers; the ethics of using human tissue for commercial purposes (think Henrietta Lacks and the HeLa cell line, or John Moore and the Mo cell line); protecting the human subjects of research; and a bit later, the ethical issues we would confront if we launched a massive effort to map and sequence all human DNA.
I had, roughly speaking, three goals. The first was to alert readers to ethical issues such as likely uses and misuses of genetic information. Already companies were doing genetic screening of workers—surreptitiously in some cases—with the company’s interest foremost. Another vital matter was how best to respect and protect the human subjects of research. Jesse Gelsinger’s death in 1999 may have set back gene therapy for years. An FDA investigation uncovered multiple violations, including failures to disclose relevant information in the informed consent process. (Note: I was a member of the NIH Director’s Working Group on Oversight of Gene Therapy Research in 2000 in response to Jesse Gelsinger’s death.)
Proper attention to research ethics might have prevented that death and its sequelae. The prospect of biosynthetic human hormones such as growth hormone and later EPO created temptations to human enhancement in sport and other realms, calling for (unfortunately rare) wisdom and self-restraint.
My second goal was to deepen our understanding of context and meaning in relation to genetic engineering and biotechnology. How, for example, should we think about the use of human tissues and cells in research, and about commercializing them? I suggested understanding them as gifts of a kind—but that requires acting as grateful recipients, which has its own demanding ethics.
Some matters that get raised as ethical issues turn out to be insignificant. So, the third goal was identifying and setting aside concerns that didn’t amount to important ethical issues. The clearest example of that was probably the widespread argument that mapping and sequencing the human genome would somehow diminish our moral significance.
I pointed out to Congress the fact that because Beethoven’s Ninth Symphony can be laid out in musical notation, that in no way diminishes the glory of a magnificent performance of that piece. Likewise, representing the human genome via its genetic sequence in no way diminishes the life of any human being. Every one of us is a “performance” of that genome, magnificent or otherwise.
New ethical issues arise as biotechnology realizes its potential. With the development of novel therapies for grave diseases, some companies devise Expanded Access Programs meant to give people access to therapies that offer real hope for a better, longer life as soon as sound evidence emerges that the therapies are indeed safe and effective. I’ve been privileged to be involved in developing such programs, and identifying the principles that should guide their design.
There will always be ethical issues in genetic engineering and biotechnology. I must say that it’s gratifying to work on those that come with increasing success in addressing human needs and alleviating human suffering.