The 21ST century, it has been predicted, will be characterized by two major developments in technology, particularly in the fields of information sciences and of human genetics. As is well known, the Human Genome Project is quickly developing and it is foreseen that, the entire make-up of the human DNA will have been decoded, at the latest, by the year 2003. These advances offer many promises for the healing of people with sicknesses stemming from genetic abnormalities. They also, however, appear to many as threatening the dignity of human persons.

Among the many ethical problems raised by these advances in genetics, the Social Pastoral Bulletin, last year, examined the merits and demerits of the increasingly frequent practice of prenatal genetic diagnosis. The subject has since been widely discussed in mass media publications and books, some of them excellent (Sato Kodo, Yuhikaku). A number of recent developments invite us now to reconsider the problems genetics potentially raise, particularly from the point of view of human justice.

First, progress in research connected with the Human Genome Project has enabled us to identify more and more genetic predispositions for sicknesses or genetically related handicaps. Second, not only was the genetic basis of sicknesses discovered, but the testing methods also have become ever simpler.

A plain blood test or a single human hair often suffices to determine the specific contents of a person's DNA. As a result, more and more adults, no longer chiefly pregnant women, are taking genetic tests. Just as in prenatal diagnosis of fetuses, however, genetic screening of adults also offers both merits and demerits. Therefore, it is important to consider the light and shadow aspects of the ever more widespread taking of genetic tests.

Potential benefits of the knowledge provided by such tests are many indeed. Detection of harmful genes may sometimes allow the prevention of a disease from appearing by modifying one's diet or avoiding situations (climate, working environment) where the disease is likely to appear. It may also permit the start of treatment at an early stage of the disease, making, moreover, use of custom-made medicines for a patient with a specific genetic component. This presupposes, of course, that a treatment of the disease or handicap is known, which is not always the case. Where no treatment is known, however, one may wonder what can possibly be the value of knowing that one is likely, but not certain, of contracting a disease in the second half of one's life, as is the case with Huntington's disease. On the other hand, foreseeing the likely occurrence of a disease or infirmity later in life may also allow a better planning of one's future.

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The possible negative consequences of being genetically tested should not, of course, be ignored and this is the object of the present article. It is important that our society prepare itself to face the ethical challenges that more widespread genetic tests and more accurate genetic diagnosis will confront us with, as we enter the 21st century. Many of these challenges will probably result from the invasion of a person's privacy as is documented in a recent page of the Yomiuri Newspaper (2 Feb. 2000). Another set of challenges arise from the eugenic mentality that is likely to be fostered as more and more people use genetic tests as a help to human reproduction.

Genetic tests and invasion of privacy

It has often been pointed out that the basic challenge raised by the increasing availability of genetic tests is that the information they yield on our health status may become the occasion of discrimination, chiefly for acquiring health insurance or finding employment. As an answer to that challenge to justice, it is sometimes stated that laws could be passed placing genetic information under a person's right to privacy. Two questions then arise. What does privacy here mean? Is a legally protected right to privacy a good answer to the challenge raised by genetic tests?

A right to privacy comprises three aspects:

  1. The right not to know my genetic status and therefore not to make use of a test,
  2. The right of not sharing that information with others,
  3. The right to use that information to make decisions based on my own values.

For instance, whether or not to abort a fetus found by prenatal test to be affected by a fatal disease.
However, it has been claimed that there are good reasons to think that, as a solution to the challenge posed by genetic tests, privacy would not work. Why is this so?

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The first kind of reasons has to do with technical difficulties. Information about genes is usually collected in a medical setting. In our society today all medical records are usually computerized. Moreover, in recent years a trend is noticed to gather and record greater and more detailed information on medical records, including genetic information and lifestyle details. As a result, the human insurance industry now collects much larger amounts of information from physicians than it gathered in the past, amassing large databases of personal information. This is often done with the tacit or forced agreement of people taking insurance policies.

One major problem here is the disclosure by some insurance companies to employers of information that is then used to make hiring or firing decisions. In 1996, 35% of the 500 companies listed in Fortune Magazine acknowledged that they draw on personal health information in making employment decisions. It is important to note that most of these violations of medical privacy seem due to the legally sanctioned, or at least tolerated, flow of medical information from the health insurers to non-health care parties, including employers and the media. Indeed, firms are known that specialize in collecting and selling medical information about many millions of people.

The social consequences of such an invasion of privacy appear in the U.S. where a research conducted at Georgetown University reveals discriminatory practices on the part of health and life insurance companies. Although these companies claim that there is no evidence of discrimination due to genetic data, the survey conducted among people with a high risk of contracting a disease because of a genetic abnormality revealed that, as many as 22 percent saw health insurance refused either for themselves or for their family.

It has also become known that a number of States in the U.S. have collected genetic data from newly born without obtaining previous permission from the parents. As a result, a movement for making illegal any type of discrimination based on genetic data is said to be gaining strength all through the U.S. Out of 50 States, 17 have passed legislation forbidding discriminatory practices when acquiring health insurance or seeking employment. More recently, newspapers have reported how President Clinton signed a decree forbidding discriminatory practices based on genetic data when hiring or promoting federal employees.

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Nevertheless, the difficulty of these questions appears well when it is noted that, at the national level, several points remain disputed. This is the case when examining how to deal with the insurance of already sick persons or when discussing whether insurance companies have the right to inquire about the medical history of the family of the person seeking insurance.

Thus, what is known from the U.S. demonstrates that privacy cannot be guaranteed in a highly computerized society, where powerful social and economic concerns militate against it. While we, as individuals, may want our genetic status to be and remain private, safeguarding the privacy of genetic information may not at present be a feasible way to prevent discrimination. As the technologies for encoding information improve, however, it may become possible for the patients to have effective control over who has access to what part of their genetic information.

A second reason why privacy would not eliminate the risks of discrimination is that it cannot be socially assured. First, the right not to know is not absolute. It is doubtful whether it extends where others, such as family members or offspring, may be at risk. For instance, some may argue that an adult at risk for Huntington's disease that strikes past middle age should agree to be tested if there are children in the family or if that person plans to have children. Also, when more genes are found by science to predispose for diseases, there will always be social pressures that limit our right not to know our own genetic constitution or to keep that information from others.

Finally, not only is safeguarding the privacy of genetic information technically unfeasible and socially subject to heavy pressures, but it has been claimed that depending on privacy as a means to avoid discrimination may be harmful to society as a whole. This is because we would then fail to notice the many other factors that are at the root of discrimination. Therefore, the effort to keep genetic information private would have the side effect of turning our attention away from other important social problems. One can think in Japan of the discrimination suffered by burakumin, where genetic data play no role whatever. Clearly, whether a person's genetic make up, when known to all, becomes a factor of discrimination has more to do with the values our society shares, whether it acknowledges the dignity of every person, no matter her possible handicaps. In Japan, judging from long standing practices, employment and marriage would be the areas most likely to be at risk when the privacy of a person's genome in not preserved. The still prevailing prejudices would also make it much harder, not to say impossible, to keep genetic information truly private.

Genetic tests as a threat to personal privacy

In short, it has already become clear that the challenges raised by genetic advances will concern chiefly questions of social justice. How can persons or groups of people be protected from the social prejudices and unjust economic disadvantages that could result from knowledge of their genetic makeup?

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Can society set up ways that allow genetic information to be kept confidential? If not, genetic tests, it has been observed, could divide people into groups labeled on genetic grounds. Paradoxically therefore, scientific progress, even as it offers ways to alleviate human suffering, may also have the unintended effect of raising new barriers to acceptance of human diversity.

Quite understandingly, life and medical insurance companies may wish to know the genetic makeup of their clients, their risks of disease and death. Difficult ethical questions arise here. Do the insurers have the right to demand such information? Conversely, do individuals have the right to withhold that information? If the degree of risk can be concealed, policyholders with low risk may be de facto compelled to subsidize people at higher risk. Would this be fair and just? Is this a price that, on account of human solidarity, we should be ready to pay in order to secure the right to privacy of genetic information for all? In the light of the historical abuse of genetic information in the past maybe this is indeed a price we should all be ready to pay for making our society safe from similar abuses in the future. Will all agree on this?

Genetic tests and eugenics

Besides the issues of social justice I evoked above, it is also important to consider how a more accurate knowledge of our hereditary make up and that of our offspring may encourage a resurgence of the eugenic mentality that affected many countries in the first half of the twentieth century. That mentality most clearly appeared in the sterilization laws passed in a number of U.S. States in the early 1920s and later most widely practiced in Nazi Germany.

It is important, however, to understand clearly that the concrete challenges raised by genetics in our democratic societies will not lie in a state program of compulsory eugenics, as was the case in Nazi Germany. Rather, these challenges will most likely result from the mere abundance of genetic information made increasingly available to all educated people within the context of a market economy, where individual profit-making is the major consideration and where genetic tests are aggressively marketed by drug making companies.

In such a social context the spread of genetic testing will create a capacity for "homemade eugenics" whereby individual families decide what kinds of children they want to have. That capacity will of course be further enhanced by the steadily more widespread practice of prenatal, and even pre-implantation genetic diagnosis. Although "order-made babies" may still long remain nothing but science-fiction for most families, one cannot doubt that repeated individual choices in reproduction will deeply affect the way future society develops according to the qualities it most values in its children.

It may be claimed that the selective abortion of defective fetuses proceeds from the free choice of individual couples and cannot be compared to the policies enforced by Nazi Germany. Nevertheless, it is not difficult to see how prenatal diagnosis, when accompanied with the abortion of fetuses carrying grave hereditary diseases or handicaps, would be inspired by values similar to those that guided the Nazis. This is well perceived by groups of disabled people and their families who, in Japan, strongly opposed the insertion of the words "fetal conditions" in the revision of the law allowing abortion. They, rightly, saw in such selective abortions a denial of their own right to have been born.

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Theirs was deemed to be a so-called wrongful life whose birth could have been prevented by a better medical technology. If this view becomes accepted by society, it is clear that people who do bring handicapped children into the world will be looked upon as foolish and irresponsible.

It is therefore not difficult to see how individual choices will progressively alter society's view of handicaps. Emphasizing the distinction between compulsory and freely chosen eugenics may be thought to ignore the fact that individual choices are never made in a social vacuum. Certainly, the immediate motivation in State and private eugenics may differ: there legally enforced, here freely chosen. But the long-term social effects of both practices remain the same. To deny this would be to close one's eyes to the impact of private choices on society as a whole.

Possible counter-measures

Prenatal genetic diagnosis is probably here to stay and, together with the aggressive marketing of genetic tests, will increasingly expose our society to the danger of a new form of eugenics. Thus, the question to be asked is how can genetic tests be controlled so as to avoid their fostering a eugenic type of mentality in society as a whole?

It will be evident to many that this cannot be done by mere legal regulation. Rather, what can be done is to educate the public as to what the circumstances are under which a genetic test is medically indicated. For instance:

  1. When a person has a family history of genetic diseases,
  2. When there are therapeutic means to prevent the disease from appearing,
  3. If the test is for a serious disorder and offers adequate certainty (not only probability),
  4. If competent counseling is available.
One could therefore advise against asking tests for untreatable disorders, tests not accompanied by adequate counseling or information about existing social support.

In this way one may hope to avoid a slide into a new form of eugenics that would eventually result into the selection of embryos on account of their sex or preferred qualities.

Patenting of the Human Genome

From what was seen above it becomes clear that many of the problems raised by genetic tests arise from the way their marketing is driven by the pursuit of efficiency and profit. Commercial genetic testing thus seeks the cooperation of health-care professionals and causes them to recommend tests for their own personal financial advantage more than for the true needs and welfare of their patients. As in other areas, here also human greed is responsible for the misuse of a biotechnology that could otherwise bring huge benefits to mankind, particularly to the weakest among us.
The pursuit of profit is also at the root of the disputed question of the patenting of technological know-how. Although one sometimes hears of fears for a patenting of the Human Genome, such fears often seem to result from a misunderstanding of what patents are.
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Patenting is a legal measure meant to protect the rights of the inventor of a new and useful process or machine, giving him, for a number of years, the exclusive right to produce, use or sell his invention. It is thus clear that patents can be awarded only for inventions that are the result of human ingenuity, and not for things as they exist in nature, such as human organs, human genes or other animal forms as they occur in nature. It is therefore inappropriate to patent the basic information on DNA sequences. This is a law of nature that cannot be the object of ownership. Patents could be granted, however, for the particular uses of this genetic material. This is because money will have to be invested in finding out ways to make the products that will benefit humanity.

The patent system, it has been pointed out, is simply a means to encourage innovation and promote public dissemination of new ideas and discoveries. Furthermore, contrary to what many believe, the grant of a pattern is not the grant of an ownership right. Neither does the patent give one the right to do with that technology whatever one wants. Rather, the grant of a pattern only gives the patent holder the right to exclude others from making, using or selling the patented technology for a limited period of time.

Although there are basic similarities between the patent systems of all countries, there are also important differences. For example, European countries do nor grant patents for methods of treating humans and India does not grant patents on pharmaceutical inventions.

If we understand well the social function of patenting, it becomes clear that what is to be feared is not the patenting of a given biotechnology in itself, but the possible misuses that can be made of that technology. It also becomes clear that a concern with social justice should cause us to question, not the patenting of all biotechnology, but rather the extent of the technologies for which patents may be requested.

Men who aimed at "Human Improvement"
NHK, Feb. 2, 1998 (45 minutes) [Resume]

The testing of fertilized eggs used in sterility treatment reminds of eugenic ideologies. In England, home of the theory of evolution, hereditary factors were thought to be responsible for the poverty and intellectual between social classes. Francis Galton studied the bodily characteristics of both gifted and deficient people. These findings became the basis of the eugenic theory. American Charles Davenport studied a large number of family trees and tried to identify genetic elements of diseases, mental capacities, and criminality. That research was used to restrict the immigration to the USA of ethnic groups considered to be inferior and sterilize hereditary handicapped.

English biologist Julian Huxley defined eugenics as the science helping to heighten the hereditary characteristics of an ethnic group. People born with handicaps are fortunate to live in institutions, he said, but it would be better for society and themselves not to have been born at all. Since eugenics aims at preserving the high quality, mind and body, of a people, only healthy persons should marry and have children. Genetic scientists were closely related to Hitler in Nazi Germany. Many mental patients were massacred, in the name of euthanasia, in order to build a superior race.

Today external fertilization has become a temptation to put into practice eugenic ideology. The Human Genome Project involves thus many dangers. How could one put a break on medical technology?