Recent technological progress is leading the Human Genome Project (HGP) to its final stages. This international endeavor officially began in 1990 and aims to map and sequence the human genome, that is, our genetic heritage. A "working draft" of the whole human genetic sequence should be available by the end of 2001 or already in the Spring 2000,[1] probably in order to deal with the private project led by J. Craig Venter and the biotechnological company Perkin-Elmer which aims to sequence the whole human genome in only three years (1999-2001). [2] The possibility of using the amount of genetic information made available by the HGP will promote our understanding of the function of our genes and their role in the etiology and pathogenesis of diseases. New diagnostic tools will be realized to obtain ones genetic make-up easily and relatively inexpensively. New therapeutic approaches will also be developed and introduced in the attempt to intervene in genetic alterations to treat them before they lead to genetic disease. Briefly, the HGP has the potential of greatly influencing and determining the biology, biotechnology, and medicine of the new millennium.[3]

In this paper I focus on the use of human genetic information on individuals which will be made available by the HGP. I do that by testing the ethical resources available to guide the potential uses of this information. The mainstream bioethical tradition, influenced by the liberal tradition, emphasizes the principle of autonomy.[4]It considers, therefore, the individual as an autonomous being and promotes privacy and confidentiality as the most appropriate ways to deal with the issues raised by the availability of genetic information on individuals.[5]

A stress on autonomy positively contributes to put the individual, and ones rights, at the center of the ethical reflection. At the same time, it simplifies the scope of the ethical reflection because ethical analysis and decisions become a reserved domain of individuals in their singularity. It also presupposes ones ability to make decisions individually and the availability of all the data which are necessary to choose. However, this ethical approach lacks a more explicit assessment of the social implications associated with the development of genetic information. To achieve this goal, it is necessary to consider and address social needs. The importance of promoting the common good makes this possible. This approach characterizes the Roman Catholic teaching on social ethics but is also shared by other ethicists from outside the boundaries of this tradition. Searching for what favors the common good does not diminish the emphasis on the individual but includes a larger set of concerns. In my proposal, therefore, the need of pursuing the common good becomes the overarching paradigm which should inform the reflection on the use of genetic information.

Because of the progress and achievement of the HGP, our genetic information will be gradually available to ourselves but also to social agents, that is, insurance companies, employers, medical institutions, law enforcement agencies, and governments which appear to be extremely interested in obtaining genetic data concerning their insured, employees, and/or citizens. In the near future it will be enough to perform genetic tests on one single cell to have access to the genetic information concerning an individual.[6] That information will be introduced in databases, stored, and will be available for further use concerning the individual as well as scientific research. The data obtained during pre-natal genetic testing and screening, for example, searching for possible present or future genetic diseases in fetuses, would be easily stored in data banks and available to those who could have access to them.

How do we deal with the ethical problems that the availability of genetic information is raising and will increasingly raise? Pragmatic solutions have been suggested. In France, for example, the almost fifty hospitals which belong to the Public Assistance in the Parisian area store the data concerning their patients by eliminating their names and replacing each one of them with a code. The absence of any record which relates the patients identity to the code assigned seems to make impossible access to the patients name. This procedure allows researchers to freely use the stored data for scientific studies without violating ones right to privacy and confidentiality. It also eliminates the need for researchers to inform patients about the results of research with the possibility of withdrawing information about their health condition which could be precious to their health. Is this a satisfactory solution? I believe it is not. I find questionable a solution that, in name of the defense of the patients autonomy, de facto promotes the researchers autonomy of research disconnecting the patients from any further relation with the data which concern their health. Those who once were patients end up merely as data in a computer hardware and on a computer screen where those data will continue to live indefinitely as such.
¶5
Furthermore, the research might eventually result in discrimination against patients who have undergone genetic tests. Insurers, employers, or even governmental agencies could use those anonymous data to discriminate among individuals in various ways. Even without having access to personal medical records, policies could be determined by the availability of genetic data concerning the whole population. The consequence would be an ethically and socially troublesome attempt to control the population by using genetic data originally collected for diagnostic purposes.[7]

The role assigned to autonomy as the key ethical principle which seems to be operative is pervasive. A second example concerns human genetic samples. Genetic laboratories, major hospitals, and law enforcement agencies have already begun to store them to avoid future possible law suits concerning the results of their genetic tests already performed. Those genetic materials have also been stored to assure that large amounts of them will be available for further research a few years from now, when new genetic tests to detect other genetic diseases or genetic characters will be available. At the moment, informed consent seems to be the only ethical tool available to address those issues. On the one hand, it focuses on the individual alone, disconnected from the social environment and assumed able to make informed choices. On the other hand, informed consent merely concerns the number of tests which are on the market today. Up to now it cannot be obtained for tests which do not exist yet. However, scientists are beginning to explore the possibility of new forms of consent, like a sort of unlimited informed consent, which does not require further contacts with the patient from whom the genetic material has been taken. Other researchers suggest that, in selected instances, it is morally required to re-contact the former patient; for example when a new genetic test performed reveals a pathological condition already present or future in that person, the siblings, and/or the relatives; or, to give a second example, when knowing the test results could improve the health of the person previously tested and/or reduce her risks of contracting diseases.

Informed consent has undoubtedly introduced some warranties in the case of many health practices and a major respect for the patients rights to be informed and to good medical treatment. But, I believe, it is still insufficient to address the complexity of the ethical issues raised by todays medicine and, in particular, genetics. It is necessary to introduce other elements of reflection in the ethical debate to expand and enrich it. I do that by emphasizing the promotion of the common good, and the concrete choices that it could make possible.

Before I articulate my proposal, a few more examples are necessary to further unpack the complexity of the issues and to show the pervasiveness of an ethical approach mostly based on the promotion of ones autonomy. My next example concerns the role played by the Internet.

This new, easy to be used, and very popular way of communicating and sharing information has played an important role in the development of the HGP since its beginning. It has allowed for the free exchange of information among scientists through the establishment of databases regularly updated with the results of the research of teams of scientists throughout the world. Data concerning mapping and now sequencing have been posted on web sites in their raw form daily and in their refined version weekly, monthly or quarterly. Scientists from all over the world, potentially even from countries which have not invested in biotechnology as the richest western countries, have benefited from working on those data. They have had the possibility of comparing and even integrating them despite the fact that they have not been part of the more basic research which has led to those data.
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The equal access to genetic data made possible by the Internet represents a major value, therefore, scientifically, socially, and economically. However, the future possibility of easy access through the Internet to data stored by various institutions raises concerns. Researchers in universities world-wide could be interested in using for their research data stored in hospitals of their own country or elsewhere. Law enforcement agencies could share their data too as well as insurance and multinational companies. The Internet will simplify, therefore, the access to genetic information of individuals as well as large numbers of people, facilitating an uncontrolled use of those data for various purposes, some of them potentially dangerous and problematic for individuals and entire peoples.

To address those issues, is it enough to raise concerns about the possible violations of ones privacy and confidentiality? On the one hand, the pervasiveness of the Internet seems to require a more globally sensitive approach, that is, an ethical tool more suitable to address issues which are not limited to the individual and ones limited circle of relationships. We need to be able to deal with the specificity of genetic information and, at the same time, with the possibility of its immediate universal diffusion and availability which is made possible by the Internet. On the other hand, the focus on the defense of ones autonomy does not seem to be sufficiently appropriate to address the involvement of the market. Biotechnological companies have been largely involved in the HGP. They have played an important role in launching the HGP.[8] They are beginning to invest by using what the mostly federally funded research (in the USA) is putting on the market. In following the rules of the market, they intend to benefit as much as possible from scientific research in university and federal settings as well as from their investments. The Internet is an instrument which facilitates and promotes those economic transactions. It can also be a means used by those economic powers to their economic advantage without civil society being able to raise ethical concerns and address them with political proposals and actions. The principle of autonomy does not allow for those interventions. On the contrary, it promotes and defends them.

While we reflect on the pervasiveness of autonomy as an ethical principle used to address the issues raised by the HGP, I believe it can be interesting to examine rapidly some of the ethical material produced by the ELSI program. The ELSI program, which stands for Ethical, Legal, and Social Implications of the HGP, is funded by the National Institutes of Health (NIH) and the Department of Energy (DOE). It was made possible by the allocation of the 3% up to 5% of the overall HGPs research budget since the beginning of the HGP in 1990. The ELSI program is still continuing. Each new five-year plan published sets the goals for this program and allocates funds to researchers interested in studying and publishing on those implications. I briefly analyze part of this ethical material because it leads us to consider the expression genetic information in a second, complementary way. In fact, genetic information does not only include the data which are produced by the HGP and those which can be obtained through genetic testing or screening.

The goals set for the ELSI projects understand the issues concerning genetic information also as a matter of information and education. To deal with genetic information means, therefore, to inform people and educate them. A considerable number of projects funded by ELSI is devoted to distribute information about the knowledge available on our genetic heritage, the technology which is necessary to obtain this knowledge, and the ethical issues associated. In studying the rationales behind a number of these projects as well as the material that they produce, it appears that the principle of autonomy continues to play a key role by being operative among researchers and by being presented as the appropriate approach to deal with the ethical problems raised by the progress of genetic technology.[9]

Those projects which aim to inform and educate constitute a large component of the ELSI program. They target four educational environments, that is, K-12, college, public/consumer, and health professionals. They aim to inform and educate the audiences belonging to those environments about progress in genetic technology by focusing on its potentialities and limitations. Students, teachers, consumers, healthcare professionals, the news-media, lawyers, judges, medical practitioners, genetic counselors, scientists, postdoctoral fellows, and people at high genetic risk are the targeted groups. The long-term goal expected from informing and educating this considerably large spectrum of individuals is their improved ability to make informed decisions about the use of genetic technologies.
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By making available information to the public and professionals, questioning is stimulated and debate is favored. Information and education are important components of a democratic, social, and political life. At the same time, to understand information and education as the most relevant task of the ELSI program, at least from a quantitative point of view, raises serious concerns. The impression is that we are assisting in a promotional campaign which aims to grant the approval of various social strata to the HGP. It can be argued, for example, whether the emphasis on information and education is merely determined by the awareness that, in the case of genetic information, it is necessary to make an extra educational effort which uses special channels, that is, the ELSI funds. A more critical hermeneutic of suspicion of this educational effort would suggest that, behind those legitimate and noble formative goals, it is hiding a more problematic rationale.

The emphasis on information and education could mask the attempt to influence society. It would aim to prepare society to be receptive to the ways in which the market will try to benefit from the amount of information, and genetic technologies that the HGP will make available. In reflecting on genetic information we have to ask whether many among the ELSI contributors play a role of press agents of the HGP, whether they become its long hand, instead of being critical thinkers on the issues involved and able to suggest new and more appropriate approaches to the problems raised.[10]

This more critical reading of a consistent part of the ELSI funding raises questions on the meaning of ethical reflection and research. Does ethics mean, mostly or merely, to inform and to educate? Without developing an academic discussion on this question in this context, I make a couple of remarks related to my topic. First, in the case of the HGP, informational and educational projects could privilege the presentation of its benefits. They could emphasize the gains related to a more extensive knowledge of our genetic heritage and to the use of technologies (e.g., genetic testing) which allow us to unpack this knowledge. A problematization of the issues could be found less profitable. Exceptions could be ethical cases which will be presented together with their most appropriate solution. To be more concrete, when we inform a woman or a couple about the possibility of pre-natal testing for a possible genetic disease, for example Huntingtons Disease (HD),[11] how do we deal with the ethical problem faced not only in the case of a positive test but already associated with the fact itself of being tested?

An approach which does not limit itself to considering the ethical problems merely from the point of view of an autonomous individual would examine a larger series of questions. In the case of HD some of the questions could be the following: Who would or should take the test for HD? Who should offer it and under what conditions? How could the quality of laboratory work be assured? How much counseling should be required before administering the test? Who should have access to test results? Only those tested? Their physicians too? And what about their siblings and relatives? Should information about HD in one individual that was relevant to another be communicated without knowledge of the person tested or over against the objection of this person? If so under what conditions and how?[12]

My suspicion is that informative and educative approaches cannot address all those questions and many others which could be raised. Or, they do that by suggesting answers articulated on an approach which tends to be focused on the single individual. As I already mentioned, in fact autonomy of choice reappears as the leading ethical principle even in the midst of informative and educational material.
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To give an example, the magazine for school children Your World/Our World devoted one of its 1996 issues, sponsored by the DOE, to the ethical questions related to the HGP.[13] The author briefly introduces her listeners to the work of ELSI researchers. They form their ethical guidelines, she writes, by listening to what people think and how they make decisions because "there are no right or wrong answers" to the ethical questions raised by genetic technology and the many "experts" disagree about the best solution. However, she presents a few basic values or principles which help to guide the decisions of researchers and, hopefully, of the readers too.

These principles are, first, autonomy: "You should be able to decide for yourself whether to have a genetic test to learn about what genes you have, and you should not be tested against your will. But who decides for a child or a teen?" Second, access to information and informed consent: "You should be able to get important information about what a genetic test can and cannot tell you." Third, privacy and confidentiality: "You have the right to keep the results of a genetic test to yourself. You also have the right not to learn the results of a test. Should you keep private something that affects other peoples health and well being?" Fourth, evaluation of the benefits and risks: "Knowing the results of genetics tests should do more good than harm, such as allowing you to get better medical care. But what if there is no treatment or prevention for a condition or a disease? Is knowledge, without the ability to act, harmful?" Finally, accessibility: "Genetic tests should be accessible to everyone. But who will pay, and for what kind of tests? Can information about genetic tests be used fairly? Will laws that protect us from discrimination apply to genetic conditions?"

After presenting those five principles the author acknowledges the complexity of the issues at stake. Nonetheless she affirms that, by themselves, people have to decide which principle is more important in that situation by using those principles. The suggested approach is claimed as the most appropriate because it will simplify the questions and move toward answers. Those principles are granted validity and legitimacy. What I claim is that they can be pragmatically operative but they lack a larger background both epistemological and critical. They address autonomous individualseven when they are children or teens, as in this casewithout placing them in a larger social context, in a web of relations. Furthermore, those principles do not allow for a more critical reading of the role played by economic and political powers in promoting the HGP and earning profits from it. They do not offer either elements to address the future use of the technologies which will be made possible by the HGP.

In the brochure which I have briefly considered, as in other ethical material funded by ELSI, we find mention of the advantages which genetics will bring to relieve human suffering caused by disease. We also find attention to respecting the rich diversity of humankind. It is common to find clearly stated, in various ethical material addressing the issues related to the use of genetic information, the need to avoid any use of genetic information to discriminate among individuals because of their genetic make-up.[14] Those references are praiseworthy. They reveal the awareness that it is not possible to consider the ethical issues raised by genetic technology without situating them in the larger framework of problems which concern the promotion of human health within society. However, a further step is necessary, that is, to establish a prioritization of the issues and of the approaches which are needed to address them.

An ethical approach which values the common good allows for this prioritization by focusing on a larger framework, that is, on the context where the various single problems are located and, at the same time, where we need to find solutions. One element which characterizes this larger framework is the attention that needs to be given to who will benefit from genetic information, from the technologies which will make it possible, and from those which will be developed by using this information (e.g., genetic therapies).
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Being somewhat simplistic, but probably not too far from reality, we can affirm that the Western countries are in cultural, political, and economic conditions which allow them to profit from progress in genetic technology. An ethical approach which exclusively values autonomy does not question this situation. Furthermore, such an approach does not offer ethical support to address the concerns of countries, in Third and Fourth world which culturally, politically, and economically depend from the richest Western countries. It does not consider either those individuals and groups which, even in the more industrially developed countries, are not in positions of power or merely cannot make their voices heard. I believe that an ethical approach rooted on autonomy needs to be part of a more inclusive attempt to promote the common good not merely of single societies but of the whole world.

Such a lofty ideal can be received with suspicion and disapproval because of mistrust in the possibility of realizing it. Historical and cultural reasons, which vary from country to country, may suggest we discard this ideal. In the Roman Catholic theological and ethical reflection, the promotion of the common good has been considered, and still is, "the overarching end to be pursued."[15] However, the concept of the common good is not exclusively present within the Catholic tradition. The work of the well-known bioethicist Daniel Callahan and the attention given to the common good by the prestigious ethical journal Hastings Center Reports can be taken as examples.[16]

To consider the promotion of the common good as the overarching end to be pursued does not mean that such an end is able to solve, or dissolve, disagreements about what is good for human beings as well as different perceptions of the most appropriate ways to achieve it. In other words, it is a goal which goes with a good dose of realism. In fact, these disagreements and diversities on what is the common good should not represent an obstacle to its realization. What is necessary, I believe, is the willingness to be part of a common dialogue aimed at defining what is the common good in concrete and contingent situations. At least, this dialogue and common search can lead to attempts aimed at achieving a stronger solidarity among different individuals and peoples in our world today.

To be more explicit, in the case of the issues raised by the progress of genetic technology, I believe that attention to promoting the common good should lead us to consider those issues within the larger perspective of reform in the provision of health-care. I find very ethically problematic that we, as a society, do not consider a matter of ethical concern the economic and political strategies of biotechnological companies. It is not a mystery that they are getting ready to profit from information which will soon be available about our genetic heritage. We can guess that in the next years and decades they will put on the market a series of genetic tests and, at least in some cases, mass screenings, to find out about possible genetic diseases or even genetic characters. Fetuses and individuals will be tested in absence of therapies for those tested or screened diseases. This is what is already beginning to happen now.

The principle of autonomy inclines us to think that it is up to single individuals to deal with those issues. They have to decide by themselves whether they, and their fetuses, will be tested. I question this approach. I prefer to look for social and political debates which tend to make explicit what does promote us as individuals, as citizens in a particular society more and more related to the whole world. The emphasis on the common good also presupposes the ability to consider, and hopefully, address the concerns of those individuals who, in the social web, do not have political, social, and economic voices. The search for what qualifies the common good could also make possible the achievement some consensus on a number of basic values as well as on their prioritization.
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For those who are suspicious of any attempt which aims to be largely inclusive, as in the case of the concept of common good, a distinguo is necessary. I believe that the attempt to assess and promote what is good for all human beings is not a screen for hidden or unconscious strategies. It does not mask the willingness to dominate of those who are proposing it. On the contrary, to choose the common good to inform ones ethical reflection and action presupposes and requires participation and dialogue to assess the social, political, and economic variables as well as to define appropriate interventions. It also implies the existence of a democratic milieu where dialogue and participation can occur. Finally, it values education and information. However, they are not considered as the goal to be pursued but as a precious instrument which leads to understand and achieve what is the common good.

A technological instrument like the Internet can offer a further element in this search for the common good. Political, economic, and technological interdependence grows stronger and stronger year after year. Recent examples can be taken from the repercussions of the 1998 Asian economic crisis on the world economy as well as from the international reactions to the genocide of ethnic Albanians in Kosovo. The Internet is part of this world wide web. It participates in transforming our world, even with its astonishing diversity, into a global village at least, from the point of view of the rapidity in exchanging information. The moral interdependence which qualifies the search for the common good could be, therefore, a further step to acknowledge, and also positively assume, this new direction in international interactions. The attention to the local and the particular could be integrated, therefore, by the attention to promote solidarity beyond the boundaries of ones life and concerns.

It could be argued that my pleading in favor of a role for considerations inspired by the search for the common good depends on theological presuppositions. I already acknowledged that the emphasis on the common good characterizes Roman Catholic teaching on issues concerning social ethics. The work of many theologians, documents of the magisterium, and the papal teaching are abundant sources for it.[17]

In the teaching of Pope John Paul II, for example, solidarity appears to be the attitude (we could even say the virtue, even if, as such, solidarity does not belong to the traditional list of virtues) which orients us to achieve the common good. Solidarity, writes John Paul II in his encyclical Sollicitudo rei socialis, is "a firm and persevering determination to commit oneself to the common good"; that is to say to the good of all and of each individual.[18] Solidarity is, therefore, the expression of ones commitment to love ones neighbor. Through solidarity, and we could add justice too, the search for the common good is related to the commandment to love one another which is at the core of Christian life and beliefs. At the same time, solidarity is not an exclusive Christian virtue. It is part of the concrete actions of many people of different religious confessions as well as of people who do not recognize themselves in any religious confession. Through solidarity the search for the common good could be shared beyond the limits of Christianity and shape the moral framework of debates about the use of genetic information. The sources for an ethical engagement aiming to promote the common good, therefore, are not merely theological nor Christian.

Generically speaking, to value the common good implies a refusal of any social marginalization of individuals or groups. Positively, it aims to make possible a full and active participation in social, political, and economic life. In addressing the issue of genetic information, I believe we cannot separate issueslike those concerning genetic testing, screening, informed consent, and the storage-use of databases and data banksfrom an accurate consideration of everything which concerns health. We need to appreciate the burden of suffering that testing and screening can determine and reflect on the support (e.g., through counseling) needed by individuals and families at risk of genetic diseases. The attention to promoting the common good requires that we consider not merely the single individual but ones web of relations beginning with the family and including ones milieu of life.
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Our creativity should lead us to articulate more concrete proposals to face future mass screenings of individuals and groups at risk. We can suppose, in fact, that the economic benefits which biotechnological companies could realize by screening large numbers of people for one or more genetic diseases or genetic characters will be highly appealing to those companies and to the groups of power associated with them. As a society, we should be able to obtain warranties about the ways in which health data, and human specimens (e.g., obtained with diagnostic biopsy or from the environmentthe hair or the skin cells which can be found in the dust) are used, stored, and who has access to them.

Finally, a stronger social solidarity should allow us to contain the daily increase of social differences in the quality and quantity of medical treatments available. We have to ask ourselves whether a generally improved level of health is not a social good to which we should aim and whether we should not allow all strata of the population to benefit from a package of health benefits (i.e., for diagnosis and treatment). A careful consideration should be given to how, as a society, we deal with the possibility that, in the future, genetic therapies will be available. Are they going to be considered at the same level than other economic goods? Who will have access to those therapies? Only those who can pay for them? Are we going to be silent witnesses to an always increasing gap between those who can use the newest technologies to improve their health and those who cannot? Those questions should not be limited to the situation in our society but should also address the gap between rich and poor countries. To address them would reveal that we have learned from history how to reject any attempt aiming to use genetic information and technologies to increase the gap between social classes and between countries. We would have learned to avoid any use of genetic technology which could lead to discrimination or even to claim the alleged genetic superiority of one race or groupthose which can use of these technologiesover against others.

In conclusion, while I acknowledge the open-endedness, probably even the humble character, of an ethical theory which aims to achieve the common good,[19] I affirm that the attempt to promote it should also lead us to question ourselves about the need of policies to establish mechanisms of control over the availability of genetic information concerning individuals (in particular through the Internet); to defend simple citizens and groups who could be negatively affected by inappropriate and unethical ways of collecting genetic information; and to realize some degree of distribution of the benefits which will be made possible by using the information obtained with the completion of the HGP, a project which, in the USA, is financed with taxpayers money.

Beauchamp, T.L., and J.F. Childress: 1979, Principles of Biomedical Ethics(1st ed.) (Oxford University Press, New York).

Beauchamp, T.L., and J.F. Childress: 1994, Principles of Biomedical Ethics (4th ed.) (Oxford University Press, New York).

Cahill, L. Sowle: 1987, The Catholic Tradition: Religion, Morality, and the Common Good, Journal of Law and Religion 5 (1):75-94.

Cahill, L. Sowle: 1999, The New Biotech World Order, Hastings Center Report 29 (2):45-48.

Callahan, D.: 1994, Bioethics: Private Choice and Common Good, Hastings Center Report 24 (3):28-31.

Callahan, D.: 1996, Can the Moral Commons Survive Autonomy? Hastings Center Report 26 (6):41-42.

Callahan, D.: 1998, False Hopes: Why America's Quest for Perfect Health Is a Recipe for Failure (Simon & Schuster, New York).

Childress, J.F., and J.C. Fletcher: 1994, Respect for Autonomy, Hastings Center Report 24 (3):34-35.

Cho, M.: 1996, A Question of Ethics, Your World/Our World, 5.

Collins, F. S., A. Patrinos, A. Chakravarti, R. Gesteland and L. Walters: 1998, New Goals for the U.S. Human Genome Project: 1998-2003, Science, 23 October, 682-689.

Cook-Deegan, R. M.: 1994, The Gene Wars: Science, Politics, and the Human Genome (W.W. Norton & Co., New York).

Curran, C.E.: 1987, The Common Good and Official Catholic Social Teaching, The Common Good and U.S. Capitalism, edited by O. F. Williams and J. W. Houck (University Press of America, Lanham, MD).

Dorrien, G. J.: 1990, Reconstructing the Common Good: Theology and the Social Order (Orbis, Maryknoll, NY).

Ellis, J.: 1999, DNA and the End of Privacy, The Boston Globe, 6 May, A23.

Etzioni, A.: 1999, Medical Records: Enhancing Privacy, Preserving the Common Good, Hastings Center Report 29 (2):14-23.

Hollenbach, D.: 1989, The Common Good Revisited, Theological Studies 50 (1):70-94.

Hollenbach, D.: 1996, The Common Good, Pluralism, and Catholic Education, The Contemporary Catholic School: Context, Identity and Diversity, edited by T. H. McLaughlin, J. O'Keefe and B. O'Keeffe (The Falmer Press, London, Washington, D.C).

Hollenbach, D.: 1998, Is Tolerance Enough? The Catholic University and the Common Good, Conversations (13/Spring):5-15.

John Paul II: 1992, Sollicitudo rei socialis, in Catholic Social Thought: The Documentary Heritage, edited by D. J. O'Brien and T. A. Shannon (Orbis Books, New York).

Langan, J.: 1992, Personal Responsibility and the Common Good in John Paul II, Ethics, Religion, and the Good Society, edited by J. Runzo (Westminster/John Knox Press, Louisville, KY).

Langreth, R.: 1999, Gene-Sequencing Race Between U.S. and Private Researchers Is Accelerating, The Wall Street Journal, 16 March, B5.

Lebacqz, K.: 1998a, Fair Shares: Is the Genome Project Just? Genetics: Issues of Social Justice, edited by T. Peters (The Pilgrim Press, Cleveland, OH).

Lebacqz, K.: 1998b, Genetic Privacy: No Deal for the Poor, Genetics: Issues of Social Justice, edited by T. Peters (The Pilgrim Press, Cleveland, OH).

McCormick, R.A.: 1999, Bioethics: A Moral Vacuum? America, 1 May, 8-12.

United States Catholic Conference: 1995, Political Responsibility: Proclaiming the Gospel of Life, Protecting the Least Among Us, and Pursuing the Common Good (United States Catholic Conference, Washington, D.C).

U.S. Department of Energy. Office of Energy Research. Office of Health and Environmental Research: 1990, Human Genome: 1989-1990 Program Report (U.S. Department of Energy, Washington, D.C.).

U.S. Department of Energy. Office of Energy Research. Office of Health and Environmental Research: 1992, Human Genome: 1991-1992 Program Report (U.S. Department of Energy, Washington, D.C.).

U.S. Department of Energy. Office of Energy Research. Office of Health and Environmental Research: 1994, Human Genome: 1993 Program Report (U.S. Department of Energy, Washington, D.C.).

U.S. Department of Energy. Office of Energy Research. Office of Biological and Environmental Research: 1997a, DOE Human Genome Program Contractor-Grantee Workshop VI, November 913, 1997, Santa Fe, NM.

U.S. Department of Energy. Office of Energy Research. Office of Biological and Environmental Research: 1997b, Human Genome Program Report: Part 1, Overview and Progress (Human Genome Management Information System, Oak Ridge, TN).

U.S. Department of Energy. Office of Energy Research. Office of Biological and Environmental Research: 1997c, Human Genome Program Report: Part 2, Research Abstracts (Human Genome Management Information System, Oak Ridge, TN).

U.S. Department of Energy. Human Genome Program, 1998: Projects in Ethical, Legal, and Social Issues (Human Genome Management Information System, Germantown, MD).

Venter, J.C., M.D. Adams, G. G. Sutton, A. R. Kerlavage, H. O. Smith and M. Hunkapiller: 1998, Shotgun Sequencing of the Human Genome, Science, 5 June, 1540-1542.

Wade, N.: 1999, One of 2 Teams in Genome-Maps Race Sets an Earlier Deadline, The New York Times, 16 March, A15.

[1]On March 16, 1999, the New York Times reported that the consortium formed by NIH, DOE, and the Sanger Center, funded by the Wellcome Trust (London), expects to obtain the first sequence draft of the whole human genome for the Spring 2000. Cf. (Langreth 1999; Wade 1999)

[2]Cf. (Venter et al. 1998).

[3]Cf. (Cook-Deegan 1994, pp. 121-122).

[4]On the role of the principle of autonomy in bioethics, cf. (Beauchamp and Childress 1979); for its revised and balanced defense, cf. (Beauchamp and Childress 1994; Childress and Fletcher 1994); for a critical analysis, cf. (McCormick 1999).

[5]For an inspiring analysis on the limits of ethical discourse and practices which aim to promote one's privacy on genetic data, see (Lebacqz 1998b); cf. also (Ellis 1999)

[6]In this paper I do not reflect on the possibility of refusing testing. On this topic, cf. (Lebacqz 1998b, pp.240-241).

[7]For an overview of "unauthorized cases" and "authorized abuses" in which people, employers, and institutions have had access to private medical records and for an interesting series of proposals which aim to both defend the confidentiality of medical information and preserve the common good, see (Etzioni 1999).

[8]For an analysis on the role of biotechnological companies in launching the HGP, see (Lebacqz 1998a).

[9]For the research projects funded by DOE, cf. (U.S. Department of Energy 1990; U.S. Department of Energy 1992; U.S. Department of Energy 1994; U.S. Department of Energy 1997a; U.S. Department of Energy 1997b; U.S. Department of Energy 1997c; U.S. Department of Energy 1998). Cf. also http://www.ornl.gov/hgmis/publicat/96santa/elsi/elsitoc.html
The complete list of the projects funded by the National Human Genome Research Institute at NIH is available at: http://www.nhgri.nih/Gov/About_NHGRI/Der/Elsi/elsiabs.html

[10]Cf. (U.S. Department of Energy 1997b, p. 7)

[11]Huntington's Disease (HD) is a fatal neurodegenerative disease which usually appears around age 40 and leads to death in 10 to 20 years. It is autosomal dominant, which means that people who develop it have one parent who has the disease. The children of a person with HD, therefore, have a 50% chance of developing the disease.

[12]Cf. (Cook-Deegan 1994, p. 235)

[13](Cho 1996, p.5)

[14]Cf. (Archer 1998, p.66; Collins et al. 1998; U.S. Department of Energy. Office of Energy Research. Office of Health and Environmental Research 1990, p.32)

[15](Hollenbach 1998, p.5); cf. also (Hollenbach 1989; Hollenbach 1996)

[16]Cf. (Callahan 1994; Callahan 1996; Callahan 1998, pp. 267-274)

[17]On the common good in the context of the Roman catholic ethical tradition, cf. (Cahill 1987; Curran 1987; United States catholic Confrence 1995, pp. 3-5); on its relation to justice, cf. (Cahill 1999).

[18](John Paul II 1992, no. 38). For an analysis and a critique of the encyclical Sollicitudo rei socialis, see (Langan 1992).

[19]Cf.(Dorrien 1990)

© 1999 Andrea Vicini, SJ. Published with permission of the copyright holder.