With the sequencing of the human genome virtually completed and the first analysis of the decoded sequence now reported, this book is important for at least two reasons. First, it explores the promises and challenges of the new genetics with comprehensive yet exceptionally readable commentary. Second, it sounds a clarion call to alert us to what Lori Andrews suggests is overpromising in genetics and so to mobilize us in combating genetic hubris. In short, Andrews insists that, as we attempt to develop legal policies to deal with genetics, we must not allow ourselves to be led by the fruits of genetic research. What is needed, she contends, is a new model for genetics policy that appropriately guides how genetic knowledge gained is used for the public good to serve ethical goals.
A professor of law at Chicago-Kent College of Law and an internationally recognized expert on biotechnologies, Andrews presents her case in eight well-structured chapters, with an extensive table of contents as a helpful guide. (The book also has 70 pages of endnotes.) Two background chapters provide a glimpse into how genetic technologies enter our lives and why a new policymaking framework regarding these technologies is necessary. The story in chapter one is not new. Evolving technologies for genetic diagnosis, treatment and research are entering our lives at an astonishing pace, yet clinical medicine fumbles with much of this new genetic information and leaves us alone to determine how to incorporate it into our lives. Just consider the saga of the breast cancer gene. With biotechnology companies and physicians heavily marketing genetic services and products, the commercialized environment of genetics also raises challenges for us as individuals and as members of a larger community. Lacking guidance about the use of genetic technologies hawked in the medical marketplace paradoxically exaggerates our faith in the predictive power of genetics. And so we rush recklessly toward genetic testing, with decision-makers left behind in their ability to determine appropriate policy.
In charting the future of genetics policy, Andrews outlines three competing frameworksmedical, public health and fundamental rights modelsand asks which model provides an appropriate starting place for the new genetics. In the prevailing medical model, a paternalistic physician is the gatekeeper of services and, although the model emphasizes individual patient decisions, little attention is actually paid to informed consent. The physician simply knows best in providing services.
An alternative public health approach attempts to prevent genetic disease through educational efforts encouraging the use of genetic technologies (e.g., testing pregnant women to evaluate whether their fetuses have spina bifida and neural tube defects); financing certain genetic services (e.g., public funding of amniocentesis under Medicaid); and in some instances mandating certain genetic services (e.g., newborn genetic screening for disorders such as phenylketonuria and congenital hypothyroidism). Public health education, Andrews points out, works only when widespread consensus holds that a particular lifestyle choice (smoking, unprotected sexual intercourse, lack of pregnancy care) is dangerous and information will change that behavior. However, consensus-building about a way to prevent particular genetic diseases (e.g., mandatory prenatal diagnosis and abortion) is unlikely. At the same time, state-mandated genetic testing for diseases is troubling on several counts. So one can agree with Andrews that the public health model does not fit genetics. This finding now leaves the fundamental rights approach to contend against the prevailing medical model.
The fundamental rights model, first applied to reproductive services, attempts to ensure that a health care service takes place only voluntarily, with extensive information provided in advance, and with quality assurance mechanisms in place. To build her case for a new genetics policy, Andrews explores over the course of five chapters the implications of the new genetics for all of us.
Having access to predictive genetic information about ourselves (and other family members) can change our self-image, our relationships with loved ones, our understanding of reproduction and our expectations about our children. In a separate chapter, Andrews provides a detailed glimpse into how genetic services affect women, people of color and individuals with disabilities. Analyzing both historical and current practices, with particular emphasis on changing concepts of normality and disability, she warns that modern genetic technologies could easily extend discrimination in all areas of life and then issues a strong appeal for protecting the disadvantaged.
Delivery of genetic services is also problematic because knowledge about genetics among primary care physicians is inadequate and quality assurance in testing is difficult. Yet what is more troubling to Andrews is what she labels genetic hubrisordinary people having an erroneous impression of what genetic information signifies, as a result of exaggeration by physicians and biotechnology companies of the predictive capabilities of genetic testing and the therapeutic worth of genetic treatments. For her, overpromising in genetics must stop. Hers is a minority position: medical pressure to use genetic services continues to grow.
Finally, ability to predict future academic worth or future health care needs may affect our cultural values and how we live together now. As in the past, employers, insurers, schools and courts will discriminate against people because of their genes. And why? The sobering news from Andrews is that genetic determinism is taking hold.
How are we to face the challenges of advancement in human genetics? For Andrews the answer is clear: with a policy model rooted in fundamental rights. In short, [this] model gives greater weight to individuals’ decisions about the use of health care services, provides for enhanced information to individuals in advance of using services, protects individuals’ ability to refuse services, provides greater assurances of quality, and gives individuals great control of information generated about them. It requires greater justification for government restrictions on genetic services. In some circumstances, it also requires public funding for services for people who cannot afford them.
In my judgment, Andrews has made her case. It is a case that needs to be heard.