Resource allocation and the genetic revolution

I want to address two questions about resource allocation and the genetic revolution. They are:

1. Is a new discourse needed specifically to discuss resource allocation in the age of the human genome?
2. If the answer is ‘no’, as I shall argue, what will be the new vectors in that discourse? I believe there are three:

• commercialisation;
• global impact; and
• community ignorance or indifference.

I want first to sketch our experience with ethical resource distribution for health, then establish the context created by knowledge of the human genome. I will then touch briefly on the essence of the ethics of resource allocation and conclude with several looming questions.

Experience with resource allocation

Our experience with rapid expansion of effective technology in medicine has presented us with a much more weighty set of applied ethical challenges. When the cost of medical care was much lower and what we could do to help relieve pain and extend life was much less, deciding how to allocate resources for medical care was less complex. The advent of noninvasive and highly informative diagnostic procedures such as CT and PET brought with it concerns about where the technology should be provided and to whom, and questions about who should pay. These in turn provoked ethical debate at a higher level than we had been used to over resource allocation.

The context of the human genome

The powerful symbolic event that has galvanised debate about the medical and public health consequences of confronting and seeking to manage through technology genetic variation is the exploration of the structure of the human genome. This has many of the mythic qualities of Neil Armstrong’s first step onto the moon. It is breathtaking in its audaciousness, frightening in its adventurousness, worrying in its significance.

Elucidating the structure of the human genome adds substantially to our understanding of the way in which diseases are transmitted by heredity from one generation to the next. But more than that, it opens up new vistas for the prevention and early treatment of many diseases. Prevention could be achieved by genetic manipulation, selective environmental hazard avoidance according to genetic susceptibility (not working anywhere near a specific chemical) or a eugenic manoeuvre.

Stephen Russell from the UK sees future possible developments in gene therapy including ‘improved manipulation of human cells and tissues outside the body to facilitate implantation of genetically engineered products, innovative approaches to gene therapy applied to common diseases of the cardiovascular, respiratory, gastrointestinal and nervous systems, future vectors to deliver genes more accurately and efficiently and considerable resources … concentrated in regional gene therapy centres’ (1997, pg 1289).

The mapping of the human genome augurs for a rapid advance in both our knowledge and application of genetic science. While much concern is given to the management of genetic information for individuals, their families and society, the Galbraithian technological imperative, which presses us to do things because they are technically feasible, may well over-ride some or even much of the debate about disclosure. New notions of privacy and confidentiality, constructed from durable principles but with due acknowledgement of context, are within reach.

In a recent presentation to the UNESCO Asian Bioethics Congress, Glenn McGee, Editor-in-Chief of the American Journal of Bioethics and Assistant Professor of the Center for Bioethics, University of Pennsylvania, said: