As we learn about scientific progress in sequencing the human genome, we wonder what these discoveries will mean to us as individuals. In fact the implications of genetic progress for the individual have received much attention in both popular and scholarly articles. Amidst the promises of genetic testing, for instance, there is also the worry that tested individuals may suffer discrimination in employment, insurance, or other areas. In contrast, not as much attention has been given to the impact of genetic discoveries on the communities to which we belong, or on the responsibilities we each have regarding the use of genetic information.

Ethics is not concerned solely with protecting individual rights. Particularly within faith traditions, it is concerned with mutual responsibilities—of the individual to the group, and of the group to each individual. Such mutual responsibilities have been formulated in many faith traditions as principles of social justice. These principles are directed toward the common good, defined as the welfare of the community as a whole and the well-being of each individual within the community.

In relation to the use of genetic information, five principles of social justice are pertinent:¹

• An attitude of stewardship toward the goods of God's creation. We are meant to make use of these goods for the benefit of human life.
• Acceptance of our solidarity with all human beings, wherever they live, and whatever their racial, ethnic, religious, and ideological differences from us.
• Recognition that scientific and economic progress ought to benefit all members of society. Specifically, the goods and benefits produced by genetic discoveries ought to be distributed fairly to all in society. Burdens or harms associated with genetic research and progress should be minimized, and no individuals or groups should experience a disproportionate share of burden or harm.
• Preferential option for the poor, the disadvantaged—including the genetically disadvantaged—and the vulnerable. Proposed policies and practices should be judged by their effect on the least advantaged members of society. Those who suffer from genetic disorders, or who predictably will suffer from such conditions, may be among the least advantaged in our society.
• A balance between individual rights and the welfare of the community as a whole. The choices made by individuals affect other members of the community, and the individual has a responsibility for these consequences.

In this article I will examine the application of these principles to genetic testing and genetic interventions. What mutual responsibilities can we identify between individuals and their communities? Should we continue to regard genetic decisions as purely private decisions, given the consequences of these decisions for the community as a whole? Does society's responsibility for the common good justify policies that may limit the genetic choices available to individuals? What are the appropriate roles for public policymakers and for faith communities in directing genetic advances toward the benefit of all?

SEQUENCING THE HUMAN GENOME: SOCIAL IMPLICATIONS
On February 12, 2001, the leaders of the two main efforts to sequence the human genome announced the publication of their findings. Francis Collins, head of the publicly funded Human Genome Project, and J. Craig Venter, head of the private company Celera Genomics, had reached a truce in their competition to produce the best result in the shortest time. They agreed to announce jointly their results and to publish their findings within the same week.

The two teams agreed on many points. For example, they agreed that the number of genes in the human genome is only about a third of what had been predicted, somewhere between 30,000 and 40,000 genes.² They also agreed on a point with social implications, that humans differ very little in their genetic makeup, and are about 99.9 percent identical genetically. There is greater genetic variation within a particular racial or ethnic group than there is from one group to another, when taken as a whole. In the words of Francis Collins, "Racial designations and ethnicity have no scientific basis."³ Craig Venter also emphasized that detailed knowledge of the human genome gives no support to those who promote bigotry and prejudice.⁴ These findings, in fact, give scientific support to the social justice principle of solidarity.

Our increasing ability, however, to identify the genetic differences that exist between individuals could result in a different kind of prejudice and discrimination—against those whose genetic profiles indicate that they are likely to develop particular diseases. Some of these diseases we recognize as genetic, or caused by a specific gene or gene mutation. But genetic tests will also be used to predict a predisposition or elevated probability of developing diseases like cancer, diabetes, Alzheimer's, heart disorders, and mental illnesses. While praising the potential benefits of such predictive genetic testing, Collins warned of potential problems, saying: "I certainly hope that . . . we will outlaw the use of predictive genetic tests in health insurance and in the workplace."⁵ Without such protections, those who are disadvantaged by their genetic status may be additionally disadvantaged socially and economically. Such an outcome ought to be opposed by faith communities that make a particular commitment to the welfare of the disadvantaged.

In the following sections I will look first at the individual's relationship to that person's smallest community: the family and extended family. After considering mutual responsibilities within this community, I will broaden the discussion to the relationship between the individual and the larger society. In making genetic choices, what responsibility does the individual have in relation to the well-being of others? Conversely, in what ways, if any, is it appropriate for the group, whether a family, a faith community, or a civic entity, to attempt to influence the genetic choices of an individual?

GENETIC TESTING AND SCREENING: THE INDIVIDUAL AND THE FAMILY
Genetic tests identify individuals who are likely, or more likely than the average person, to develop a particular disease—information similar to that found in a family history. Experience with individuals and families who are at elevated risk for a specific disease suggests, however, that genetic test results are somewhat more sensitive than family history. A positive genetic test may be viewed as more precise and definitive than family history, or as a prediction about a future eventuality that one would prefer not to know.

Most people are familiar with prenatal genetic testing. But today an individual may take a genetic test for a variety of other purposes. A diagnostic test may identify the cause of symptoms one is experiencing. A presymptomatic test may indicate that one has the gene for a particular disease, Huntington's, for example, even though symptoms may not develop until decades later.⁶ A predictive or predispositional test may identify a higher than average probability of developing a common disease, for example, breast or colon cancer.

Members of families at risk for Huntington's disease often anguish over whether to have presymptomatic testing.⁷ If a parent has the disease gene, then each child has a 50 percent chance of having it. While the presymptomatic test has been available for years, the majority of at-risk persons choose not to be tested. Some who begin the testing process do not return for their test results, saying they changed their minds.

Currently under debate is whether we have a responsibility to know our own genetic status and to inform at-risk family members.⁸ There are no absolute answers. These questions must be considered on a case-by-case basis, depending on the nature of the genetic condition, the availability of an effective response to a positive test result, and the importance of knowing genetic information when making decisions. Two examples illustrate these points.

Some genetic conditions are treatable. Hemachromatosis, or iron overload, can be effectively treated through phlebotomy. If untreated, it can lead to organ failure and even death. If a person knows she carries the gene for this condition, she could be treated; concern for the welfare of relatives suggests that she ought to inform them about her positive test, since they too would be at risk.⁹

In contrast, there is no presymptomatic treatment or even preventive strategy for Huntington's disease, so there are no medical benefits attached to presymptomatic testing. However, persons who are making life-altering decisions, decisions that also affect others, may have a responsibility to seek genetic information that is pertinent to those decisions. Decisions about whether to marry and whether to conceive one's own biological children are prime examples of such decisions. Minimally, one's prospective marriage partner has a right to know about a familial risk.

Surveys show a generally positive attitude toward genetic testing, including openness to being tested, among the public as a whole. However, studies of families where a genetic disorder is present suggest a more ambiguous situation. Different members of these families may have very different attitudes toward being tested and toward disclosing results to other family members. These persons may be fearful of economic consequences if their status becomes known, and they may also fear the effects that test results may have on the family dynamic. In the words of Troy Duster:

A previously shared legacy is suddenly redefined in a way that emphasizes differences among family members . . . [Knowing each other's genetic status] introduces classifications into the family that, however practical, are likely to be disruptive of previous relationships.¹⁰

The following scenario is abridged from a case in R. A. Willer's book, Genetic Testing and Screening:¹¹

Kurt's test results, should he reveal them, would provide information about the status of other family members, which some of them do not want to know. If Kurt's test is positive, then it is essentially certain that his father Robert carries the Huntington's gene and will develop the disease. If Robert has the gene, then his daughter Cindy will know she has a 50 percent chance of having it, and she can no longer claim total ignorance.

Even without knowing the results of Kurt's test, family members feel that Kurt has broken an unspoken compact with them. But Kurt may not be as committed to this compact as others are, and since it was never discussed openly, he may not consider it binding on him. Now he must balance his desire to know his own status, in order to plan his life, with his family relationships and with his family members' right not to have unwanted information forced on them.

This case is not unusual. Some women informed of their mother's or sister's test results for the breast cancer gene mutation are so angry that they become estranged. But in other situations, family members eagerly pursue such information, even after the death of the person who had been tested.¹² Every family is different, making the process of genetic decision sensitive and complex.

For genetic conditions that are recessive, a carrier of the gene will not develop the disease, and the disease can be transmitted to offspring only if both parents are carriers. Tay-Sachs and cystic fibrosis (CF) are examples of recessive conditions.¹³ For such types of conditions, the screening of at-risk individuals prior to marriage, or before conceiving a child, can provide valuable information that is pertinent to marital and reproductive decisions.

The Dor Yeshorim project of the Orthodox Jewish community promotes anonymous premarriage screening of young people for several recessive conditions, including Tay-Sachs and CF. The high incidence of these diseases within the community of Ashkenazi Jews imposes a heavy burden on community resources. The Dor Yeshorim project provides educational and support services as well as genetic screening to lessen this burden. If the anonymous screening process identifies both members of a prospective married couple as carriers of the same gene mutation, they are advised that they are not suitable marriage partners.¹⁴ This project attempts to balance the rights of individual members with the well-being of the community as a whole.

However, apart from such a tight-knit community where marriage choices are approved or rejected by one's parents and religious community, premarriage screening is rarely used. In a study of forty-four CF carriers identified through testing, all but two were tested only after the birth of an affected child. Two others, tested as a couple and found not to be carriers, had known they had CF in their families but chose not to have premarriage testing. They sought testing after they married because their families pressed them to do so.¹⁵

There may be a moral responsibility to seek information about one's carrier status to avoid marrying another carrier and then conceiving a child with the disease.¹⁶ This responsibility seems most clear in case of a devastating disease such as Tay-Sachs, where an infant begins to deteriorate shortly after birth, dying within two to four years. However, the couple mentioned earlier said they refused premarriage screening for CF because they did not want their genetic status to influence their marriage choice. Studies by Duster and colleagues, involving families with either sickle cell or CF, suggest that individuals in at-risk families "find carrier testing an uncomfortable fit with the ideology of romantic love."¹⁷ Also some couples refuse testing related to reproduction—for example, preconception genetic screening—because they prefer to accept whatever happens.

Persons and families facing genetic decisions often need counseling that goes far beyond traditional genetic counseling. Genetic counselors have customarily seen their role as that of providers of information and resources. Yet many who face the emotional, relational, and moral issues raised by genetics, hope for a deeper level of support and assistance. One parent who has experienced standard genetic counseling says:

Some clients may benefit from interacting with a religious or moral counselor who would supplement the services of the genetic counselor. But to be broadly effective, faith traditions will have to look for ways to provide multidisciplinary services. For example, seminaries and theological schools could offer programs that combine science, ethics, and therapeutic counseling to educate a new type of genetic counselor—one who serves within a faith community, is knowledgeable regarding the science of genetics, and is open to consideration of moral and ethical issues.

EUGENICS, SOCIAL GOODS, AND MORAL CHOICES
Decisions regarding genetics have ramifications beyond the individual and the family; they also have implications for the overall health of the community, particularly for the health of its children. When children and youth struggle to survive and function despite severe genetic conditions, their needs call for a community response. A generous response may enrich the community that pools its resources to provide assistance, and may express its commitment to the principle of solidarity. Yet the needs for medical, rehabilitative, and supportive services may be enormous, resulting in a significant drain on a community's limited resources.¹⁹

The Dor Yeshorim project shows how one religious community has assumed a role in genetic screening, educational programs, and support for families affected by genetic diseases. But few people, even those who are active in faith communities, belong to such a coherent and close-knit group. Most faith communities in the United States play little role in guiding or supporting the genetic decision making of their members. The impact of genetic decisions on the well-being of the community as a whole suggests that a larger role would be appropriate. Faith communities have many avenues for helping their members deal with genetics issues—from adult education programs and pastoral counseling that combines competency in genetics with skills in religious and moral counseling, to networks of caregivers who relieve parents stressed from caring for a disabled child.

What of civic communities? Should they play any role in individual and family genetic decisions?

The initial response of perhaps most people is that such communities should play no role. We recall eugenic policies in the first half of the twentieth century; states and nations attempted to improve the genetic constitution of their citizens. From Fitter Family contests at state fairs, to sterilization of individuals regarded as mentally deficient, to the shocking excesses of the Nazi regime's quest for racial health and purity—historical recollections lead us to be wary of state involvement in genetics.

Eugenics arouses a nearly universal negative response, in advocates as well as opponents of genetic research and intervention. Opponents warn us that genetic discoveries are still susceptible to horrendous abuses like those of the past. Supporters counter that we have learned from those abuses and will not repeat them. For both sides, however, the concept of eugenics is a negative one, expressing a morally suspect public policy.

What characteristics of eugenics give rise to this negative connotation? Critics point to two qualities they believe are inherent in eugenics as it has been practiced: the use of coercive means and the pursuit of social goals.²⁰

Today we value personal freedom in both reproductive and medical choices. We would criticize attempts by the state to specify who may or may not have children, or to require or prohibit any form of genetic testing. Reproduction is a private matter where our own values, moral views, and religious beliefs, rather than public policy, guide us. Not only must the state refrain from coercing reproductive and genetic decisions, but it should not promote policies aimed at directing private choices toward social goals, such as improving the human gene pool. Rather, individuals and families should be encouraged to make decisions in light of the values and well-being of their own family. This emphasis on private decision making is not only the general view in our society, it is also the central value of the profession of genetic counseling.

This contemporary attitude, however, requires analysis. State coercion can come in forms other than public policy. Many families are coerced by limited economic circumstances. They may be unable to afford recommended genetic testing or, perhaps more significantly, may be unable to afford the medical treatment, rehabilitation, and supportive care that would be needed for a genetically disabled child. Their economic circumstances and their type, or lack, of medical coverage, may stringently limit their real options. Resources for medical care in our society are currently not allocated according to principles of social justice.

In another form of social coercion, families may be subjected to social disapproval because they have given birth to a child with a severe genetic condition, since they presumably had opportunities for preconception screening and/or prenatal diagnosis. Social disapproval may provide a justification for economic retrenchment: "It was their decision to have the child, so it's their problem to take care of it"—a clear denial of the principle of solidarity. In other milieus, the social pressure may work oppositely. Communities that disapprove of abortion, or that regard any genetic intervention as playing God, or that wish to show support for disabled persons, may disapprove of families whose decisions are seen as incompatible with those commitments.

Thus it is unrealistic to think that public policy expressed in coercive laws is the only type of coercion. Overlapping communities and social entities have interests in reproductive and genetic decisions; they may exercise either economic or social pressure to promote those interests.

Is society's interest in familial genetic decisions entirely bad? When an individual or family is faced with a decision regarding genetics, should their own interest be the sole consideration? In most areas of human life, a responsible ethical stance requires attention to the broader consequences of one's choices. Why not here? Surely the five principles of social justice require personal responsibility for the broader consequences of individual choices.

Diane Paul notes: "Private decisions may, taken collectively, have population effects."²¹ "Old" eugenics is assumed to be "bad" because it reflected social interests, while a "new" eugenics is regarded as at least potentially good as long as its interests are private and individual. But in Paul's words:

For understandable reasons, contemporary American society has determined that it is best for government to stay out of reproductive and genetic decisions. The moral and value polarization of our society makes it extremely difficult to reach agreement on such issues. Thus, we have essentially no regulation of the use of assisted reproductive techniques in the United States.²³ Federal policy prohibits funding of research on such techniques when they involve the creation or study of human embryos in a laboratory. Because of the prohibition on funding, there is no federal involvement in this type of research, thus leaving the development of novel methods entirely to private enterprise.

Some of these techniques involve genetic testing. One example is preimplantation genetic testing of embryos to select those free of genetic disease for implantation in the prospective mother. Other techniques involve genetic manipulation, such as combining the cytoplasm from a younger woman's donated egg with the nuclear DNA of an older woman's embryo to enhance its viability. Given the absence of public policy and regulation, researchers, clinicians, and patients may essentially pursue any reproductive and genetic options they choose.

Paul radically suggests that our problem may be, not that the government is too involved in reproductive and genetic choices, but that it isn't involved enough. She notes that John Stuart Mill, the prime defender of individual autonomy in his essay On Liberty, maintained that the state ought to take greater responsibility, not less, in reproduction and parenting. In his view, these areas were inherently social with social consequences, and not purely private.²⁴ Cynthia Cohen, advocated greater regulation of reproductive techniques:

While Mill and Cohen were not explicitly referring to the genetic choices we make on behalf of our offspring and prospective offspring, their remarks are easily extrapolated to that context. Genetic testing and genetic manipulation within the reproductive context not only affect the welfare of our children and the well-being of our families, but also have consequences for the larger communities to which we belong.

The two characteristics of eugenics that were identified earlier as negative need to be addressed. First, the use of coercion, is ethically unacceptable, whether it is economic, social, or legal. Individuals and families must have the liberty to make their own moral choices regarding the use of genetic testing and genetic technologies.

But the second characteristic, the pursuit of social goals, if interpreted as the common good or the welfare of the larger community, is not necessarily ethically negative. Individuals ought to consider the consequences that their genetic choices impose on others. This sense of responsibility for the common good is central to the social justice principles enunciated at the beginning of this article, particularly the principles of stewardship, solidarity, and distributive justice.

Without such a shared sense of moral responsibility, our common concerns and interests run the risk of being overpowered by the force that is ready to move into every vacuum in a capitalist society: the marketplace.

THE COMMERCIALIZATION OF GENETICS AND REPRODUCTION
When they jointly announced the sequencing of the human genome, the leaders of the Human Genome Project (HGP) and Celera indicated that they would continue to pursue different approaches to publicizing their data. All data from the publicly-funded HGP are available through the Internet. While Celera is able to access these data, it puts restrictions on access to its own results.

This difference may not appear important to the ordinary citizen. However, the commercialization of genes and gene products could affect who has access to the benefits of genetic progress, and thus could have social justice implications. Our tax dollars have funded the HGP, while private companies may use HGP data to develop diagnostic and predictive tests, drugs and pharmaceuticals, and other highly lucrative products.

Public policymakers are charged with devising policies that respect justice and promote the common good, while recognizing that, in a market economy such as ours, providing incentives for business interests to develop innovative products may promote human health and well-being.

We have already experienced the dominant private market in assisted reproductive techniques. Developed mainly through private investment, at least in the United States, these techniques are available to those who can afford them. According to Paul, the absence of social policy on reproductive technologies has resulted in the commodification of these techniques:

Great Britain has written comprehensive legislation and regulation specifying how the practices of assisted reproductive technology may be offered. With regard to two areas, egg donation and surrogate motherhood, these carefully crafted public policies have generally been successful in preventing abuses and commercialization. In contrast, in the United States we see egg donation becoming a market enterprise, with advertisements that offer as much as $50,000 for a cycle of egg "donation" from a suitably desirable young woman.²⁷ Similar sums have been offered to women who are willing to carry a pregnancy as surrogate mothers.

The human genome provides an even richer treasure to be mined for commercial profit. When some genetic scientists abandoned the publicly funded HGP to start private companies, such as Celera, Incyte, and Human Genome Sciences, they often did so because of scientific disagreements with the HGP methods. But the existence of these private companies, sequencing human and other genomes and identifying specific genes, opens the door to private ownership of the information generated. While scientists at these companies have access to the data that is generated through public financing, their own companies may limit access to their data as they choose.

To ensure that it will receive the profits that can result from its discoveries, a company may rush to submit patent requests for genes and genetic sequences as soon as they are identified. The federally funded researchers also submit such requests but to protect the public's interest; the U.S. Department of Health is among the top ten worldwide in number of applications submitted. While much publicity is given to hasty corporate submissions, both the U.S. and the European Patent Offices are, according to some, inordinately slow to grant the patents. For example, while one company has filed applications to patent over 16,000 genes, it has been granted fewer than 200 actual patents.²⁸

The U.S. Patent and Trademark Office (USPTO) is trying to walk a fine line. It must follow the law that defines conditions under which a patent is to be granted, and cannot refuse a request that satisfies these conditions. On the other hand, many individuals and organizations object to the possibility that a small number of companies will gain control of a large amount of genetic knowledge, enabling them to commercialize this knowledge and exclude other researchers from developing products based on it. On January 5, 2001, the USPTO announced the final form of the guidelines it will use as criteria for evaluating requests for genetic patents. These guidelines are somewhat more restrictive than a previous form, but they make it clear that a gene may be patented as long as the applicant shows that the discovery has "credible, specific, and substantial use." It is up to the USPTO examiner to determine whether these standards are met.²⁹

The biotechnology industry has expressed satisfaction with the new guidelines, while some professional organizations and public interest groups are still dissatisfied.³⁰ Public interest groups for persons and families with genetic conditions are concerned about patent policies and commercialization that may prevent the fair and just distribution of genetic tests and interventions.

The experience of families whose children have Canavan disease illustrates the potential problems.³¹ Thirteen years ago, one such family approached a molecular scientist and persuaded him to search for the gene mutations that cause this disease. The family organized a registry of affected families and helped recruit tissue donors, eventually leading to identification of the Canavan gene and a test for its presence. The scientist's employer, Miami Children's Hospital, assumed ownership of the discoveries, obtained a patent on the gene in 1997, and began licensing the use of the genetic test under stringent restrictions. Families of tissue donors object to aspects of this policy, for example, the royalty fee for each test and the limitation on tests that may be performed by each licensee. Consequently, the families are suing the scientist and Miami Children's Hospital for "misappropriation of trade secrets."³²

Other genetic support groups have learned from this experience and are working proactively to retain control of the products of research to which they contributed. The group PXE International, whose members enabled scientists to discover the gene for the degenerative disease pseudoxanthoma elasticum,³³ immediately submitted a provisional patent application when the gene was isolated. Their final patent application will be submitted jointly with the researching institution, but on terms that will provide PXE families with fair access to tests and other products.³⁴ This group is making use of the patent system as a way to protect their own interests against excessive commercialization and the unfair restrictions that often result.

Perhaps the most lucrative commercial outcome of sequencing the genome could be new pharmaceutical products. The very day the publication of the human genome was announced, business sections of newspapers speculated on what the findings would mean for pharmaceutical companies. If there truly were only about 30,000 genes, did that mean that the potential for new drugs was much less extensive than had been thought?³⁵

Rather, scientists believe that progress in genetics will lead to an enormous variety of new medicines that are tailored to the genetic constitutions of individual patients. It is well known that different patients react differently to drug therapies. Some medications for high blood pressure, for example, are highly effective for certain patients but not for others, and often patients try one drug after another until something works. The effectiveness of cholesterol-lowering medications varies from patient to patient, as does response to the drug tacrine for Alzheimer's. Adverse reactions also vary from patient to patient, such as thrombosis, or blood clots, resulting from oral contraceptives; or an inability to properly metabolize the anti-cancer drugs given to children with leukemia.³⁶

The new field of pharmacogenomics aims to develop drugs that will be safe and effective for the individual patient, given his or her own genetic makeup. But what effect will this have on the rising price of pharmaceuticals? In 1999 prescription drugs, according to one estimate, accounted for nearly 10 percent of all U.S. healthcare costs and were projected to rise approximately 12.6 percent per year, forming the fastest growing portion of the healthcare budget.³⁷ Increases in drug prices are forcing some employers to reduce coverage. And the problem of prescription drugs not being covered by Medicare nor by most Medicare supplemental policies remains unresolved.

A drug company is interested in researching drugs that promise substantial profits, at least during the first twenty years when patent protection applies. Such profits are unlikely with drugs that would be used by only few patients. The federal government has recognized this problem by offering special incentives to encourage drug manufacturers to develop drugs for "orphan" diseases, conditions that have low prevalence in the population.

What policies would encourage companies to develop oral contraceptives that are needed for safety reasons by only a few women? A similar question can be raised about every type of drug where only a few people need a specially tailored pharmaceutical product because of their genetic makeup. Public policy can offer incentives to manufacturers to develop such specially formulated drugs, but in a market economy it cannot require them to do so.

Will each of us be a "genetic orphan" with respect to one or another condition? Genetic testing may indicate that the customary treatment would be either ineffective or unsafe for a person, yet there may be nothing else available. If the reason that an appropriate drug has not been developed is solely the drive for higher profits, then affected individuals who are disadvantaged and vulnerable because of their medical condition and genetic makeup are doubly disadvantaged because of the priority given to profits over human well-being. For these individuals, the promise of genetic progress may be nullified by the interests of the commercial marketplace.

IMPROVING HUMAN BEINGS: THE ENHANCEMENT DILEMMA
In their book, From Chance to Choice, Allen Buchanan and his coauthors propose the following scenario:

The possibility that this hypothetical scenario could become a reality leads the authors to examine its implications for social justice. In a society committed to equality, at least in the sense of equal opportunity, should privileged families have access to genetic interventions that give their children advantages, be they physical, intellectual, or psychological?

Those who would answer "yes" point to analogies: Families who have the necessary resources may send their children to better schools, provide tutoring or private lessons, and obtain access to the highest level of medical care. Why should access to genetic interventions be any different?

Those who would question this sort of access by affluent families to genetic improvements for their children express concern about widening the opportunity gap. In their view, societal resources should be devoted to enhancing opportunity for those least advantaged due to the socioeconomic status of their families, thus expressing the social justice principle of the preferential option for the poor. Moreover, as suggested in the final sentence of the scenario, when genetic interventions are sought by parents who want their children to be in the upper 20 percent of the population regarding height, intelligence, or some other quality, over time the population mean and upper percentiles keep rising, making the effort at superiority statistically self-defeating.

Whether one supports or opposes access to genetic interventions aimed at improving or enhancing an individual's qualities or abilities may depend on one's view of the absoluteness of parental liberty. If one believes that parents have a right to pursue any reproductive and genetic avenues they wish in relation to their offspring, as long as they do not cause harm to them, then one would be inclined to allow parents and prospective parents any options they can afford.³⁹ But if one believes that society ought to play a role in determining what sorts of interventions are likely to provide good outcomes for the community as a whole, consistent with the principle of solidarity, then one would be inclined to oppose the availability of at least some interventions.

Debates about whether prospective parents ought to be able to use technologies that enable them to choose the sex of a child are merely the tip of the iceberg.⁴⁰ Should parents be able to select embryos in which desirable traits are identified through preimplantation genetic diagnosis? Should parents be able to manipulate embryos to give them a genetic edge—in height, memory, or even behavioral traits like gentleness?

While the predominant American attitude toward reproduction is the protection of individual liberty, the range of genetic options likely to be available in the coming decades forces us, as a society, to reexamine this attitude. Genetic interventions, while freely selected by individuals and families, have consequences for society as a whole. Consider the use of prenatal amniocentesis to select for sex in India, an illegal but common practice. In certain Indian states, the ratio of girl to boy births is 80 to 100—an imbalance likely to result in serious social problems.⁴¹

Most people would applaud safe genetic procedures that would make human beings immune to disease agents, such as HIV, or resistant to cancer. But people are justifiably concerned about interventions that—while they may suit an individual's or couple's preference, or may give a specific child genetic advantages—do little to contribute to the well-being of society as a whole. Such investments of our common resources through, for example, research funding and the training of scientists and physicians are not defensible. Moreover, they are likely to widen the gap between the advantaged, who become more highly advantaged, and the disadvantaged, who become comparatively more disadvantaged. In a society that espouses equality and democracy as central values, a society where faith communities support social justice principles, such genetic engineering should not be the goal, or even the unintended outcome, of progress in genetics.

CONCLUSION
For people of faith who are committed to the social justice principles enunciated in our traditions, an elitist approach to genetic discoveries is unacceptable. The benefits of genetic testing for human health cannot be available only to those who are able to afford them. The development of gene-based pharmaceutical products cannot depend solely on manufacturers' assessments of what drugs will be most profitable. The patent system cannot be used to limit access to the benefits of genetics for the sake of corporate profits.

Our common resources are invested in scientific and medical research and in medical diagnosis and treatment. We pay for research through our taxes and contributions to nonprofit organizations. We pay for medical care through resources pooled in insurance plans and government-provided services. We pay a large share of the cost of training scientists and physicians at both the state and federal levels.

As a result, we are entitled to make our voices heard. A strong national consensus opposes some genetic procedures, for example, cloning a human child. Where there is such a national consensus, legislation is imperative.⁴² But on issues that lack consensus, persons who are committed to social justice in the use of resources may act more effectively by using advocacy and other efforts to influence public opinion.

Educational programs to raise awareness of genetic issues and to link these issues with principles of social justice are the first step in promoting genetic policies that are fair and that benefit everyone, especially the least advantaged. Faith communities have an obligation to provide this education and guidance to their members.

NOTES
1. Stephen M. Colecchi, Sharing Catholic Social Teaching (Washington D.C.: U.S. Catholic Conference, 2000); Bruce R. Reichenbach and V. Elving Anderson, On Behalf of God: A Christian Ethic for Biology (Grand Rapids, Mich.: William B. Eerdmans, 1995).