The new genetics and its consequences for family, kinship, medicine and medical genetics

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Abstract

In the past several decades there has been an explosion in our understanding of genetics. The new genetics is an integral part of contemporary biomedicine and promises great advances in alleviating disease, prolonging human life and leading us unto the medicine of the future. The aim of this paper is to explore the ways in which people make sense of the uncertainties that are associated with the new genetics, which by definition involve family and kinship relations. We explore the degree to which medical genetics places the patient in a double bind between the qualitative certainty and quantitative uncertainty of genetic inheritance that reinforce notions both of fear, and control of a person's future health. Second, we propose that the new genetics has medicalized family and kinship creating profound ethical and practical dilemmas for both the individual and for medicine as a whole.

Introduction

In the past several decades there has been an explosion in our understanding of genetics. This burgeoning knowledge has fueled interest in genetic issues by the lay public and the mass media.1 The new genetics is an integral part of contemporary biomedicine and predicts great advances in alleviating disease, prolonging human life, and leading us into the medicine of the future.2 It promises to open new medical vistas, new possibilities, and also produce profound new problems. At its most fundamental, the new genetics attempts to address basic questions about the meaning of being human, and seeks to open what some have called the Book of Life (Collins, 1999; Kay, 2000). The new genetics claims that it will set humans on a firm course to discover and control the causes of heretofore unpredictable aspects of our lives, such as disease, and even personality characteristics such as shyness, optimism, intelligence and aggressiveness.

According to current knowledge of genetics, at its most fundamental level, the differences between living creatures in the world are dissolved because all life utilizes the same genetic code. The fact that earthworms, single cell organisms, and humans all share this same code reveals in a powerful and non-metaphorical way that all living things are related. However, while genetics underlies our similarity with all life, it also defines our individuality. All human beings share 99.9% of their DNA with one another. Yet, each person possesses a unique arrangement of the 3 billion base pairs of DNA that define him or her as an individual. An error in even one of these 3 billion bases can result in devastating disease, death, or altered behavior.

Despite new discoveries by molecular biologists, the new genetics suffers from inherent uncertainties. While the new genetics increasingly attempts to accurately predict an individual's chances of, for example, developing breast cancer, or colon cancer, the predictions are probabilistic and will never achieve complete certainty. But exactly what does it mean to an individual if she is told that her risk of developing breast cancer is 80% by the age of 80? What certainties are there, how do we arrive at these probabilities, and to what constructive use do we put such information?

Two major avenues exist for assessing such probabilities. An extensive family history is, at present, the key tool used by modern medicine to estimate an individual's risk of disease. Acquiring a family history requires detailed information from an individual about their relatives’ ages, medical problems, relationships, ancestry and ethnicity. While such information has always provided at least some useful data for the estimation of risk, with the advent of the new genetics, predictive genetic testing (PGT) has come to the fore. PGT couples information provided from the family history with analysis of an individual's actual genetic code in order to predict an individual's risk of disease.

The aim of this paper is to explore the ways in which people make sense of the uncertainties that are associated with the new genetics, which by definition involve family and kinship relations. Inasmuch as modern medicine increasingly regards diseases as rooted in genetic inheritance, the questions we pose are these: first, how do such explanations influence people's understandings of family and kin? In this context, we will explore the degree to which medical genetics may place the patient in a double bind between the qualitative certainty and quantitative uncertainty of genetic inheritance. By this we mean that, whereas patients seek certainty in the form of an unambiguous prognosis, genetics can only offer predictions based on probabilities that are never certain. Most important, genetic prognostications apply to the aggregate rather than to the individual, whereas the patient desires information that is applicable to his or her specific condition.3 This quandary tends to reinforce notions both of fear and control of a person's future health.

Second, we will propose that family and kinship are being medicalized as a result of the current emphasis on medical genetics and its clinical application (Finkler, 2000).4 With such medicalization, profound ethical and practical dilemmas arise for both the individual, as well for the field of medicine as a whole, especially in view of the uncertainty intrinsic to the new genetics. Given that medical genetics and genetic counseling rests on knowledge of families and kin, what impact do assumptions of genetic inheritance have on contemporary notions of autonomy and privacy of the individual? To address issues that are significant both theoretically and practically is to reveal advantages and disadvantages of contemporary medical genetics for the individual patients we have studied and also counseled.5

To illustrate these propositions, we will briefly discuss what we mean by the medicalization of family and kinship. We will show its significance for the individual by means of a case history, and we will conclude the discussion with theoretical and practical implications of the medicalization of family and kin within the context of uncertainty. It is important to stress that we do not intend to suggest that all Americans conform to our analysis. Individuals will obviously have varied responses to the assessments they receive from physicians and the information to which they are exposed to in the media. Our goal is to point to new issues and dilemmas that the new genetics may create that may not have been considered previously.

Section snippets

What does medical genetics mean by certainty?

There is a public perception that the new genetics is highly accurate (indeed deterministic) in predicting the future through certain tests. Nevertheless, from the perspective of the medical geneticist, PGT for the presence of hereditary susceptibility to develop disease is fraught with uncertainties. While discovery of a particular mutation in the gene BRCA1 implies a high risk of cancer for those who carry it, significant uncertainty remains because of its probabilistic nature. These

The medicalization of family and kinship in present day society

Medicalization refers to the drawing into the biomedical sphere of certain physical characteristics and behaviors that were once viewed in terms of religious, ethical, or moral transgressions but have been reinterpreted as diseases. Examples include alcoholism, gambling, learning disabilities, and increasingly, antisocial conduct. Paradoxically, medicalization of such conditions can instill both a sense of helplessness (because of pre-ordination) but also the (valid) hope that the situation may

Example of the medicalization of family and kinship on the road of uncertainty

We present Dorothy, one of various cases, to illustrate the interplay between the medicalization of family and kinship, between a person's quest for a degree of certainty and the inherent uncertainty in medical genetics. Dorothy's narrative reveals tiers of conflicting interpretations and anxiety about her potential fate because of her family's medical history. We believe that Dorothy represents most of the people we have studied, but we cannot assure the reader how typical she is. There is

Consequences of the medicalization of family and kinship

We can envision myriad effects ensuing from the medicalization of family and kinship. Generally speaking, the foreseeable consequences of the medicalization of kinship for all people may be that they may no longer need to present with complaints to be regarded as sick. They may be considered sick prior to having any symptomatology, other than originating from a family of people with a particular disease. Those people who have a member in the family or kinship group who has suffered from breast

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