Human Genome Project

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When</div> <div> begun, HGP was dubbed “big science” comparable</div> <div> to placing human beings on the moon. It was international</div> <div> in scope, involving numerous laboratories</div> <div> and associations of scientists around the world</div> <div> and receiving public funding in the United States</div> <div> of $200 million per year with a scheduled fifteen</div> <div> year timeline. The U.S. Department of Energy</div> <div> (DOE) began funding the project in 1987, followed</div> <div> by the National Institutes of Health (NIH) in 1990.</div> <bR> <div> <B>History and goals</b></div> <div> The scientific goal was to map the genes and sequence</div> <div> human DNA. Mapping would eventually</div> <div> reveal the position and spacing of the then predicted</div> <div> one hundred thousand genes in each of the</div> <div> human body’s cells; sequencing would determine</div> <div> the order of the four base pairs—the <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>A </I></FONT>(adenine),</div> <div> <I>T </I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >(thymine), </FONT><I>G </I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >(guanine), and </FONT><I>C </I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >(cytosine) nucleotides—</FONT></div> <div> that compose the DNA molecule. The</div> <div> primary motive was that which drives all basic science,</div> <div> namely, the need to know. The secondary</div> <div> motive was perhaps even more important, namely,</div> <div> to identify the four thousand or so genes that were</div> <div> suspected to be responsible for inherited diseases</div> <div> and prepare the way for treatment through genetic</div> <div> therapy. This would benefit society, HGP architects</div> <div> thought, because a library of DNA knowledge</div> <div> would jump start medical research on many fronts.</div> <div> Many early prophecies found their fulfillment.</div> <div> Some did not.</div> <bR> <div> What was not anticipated was the competition</div> <div> between the private sector and the public sector. J.</div> <div> Craig Venter (b. 1946) led the private sector effort.</div> <div> While on a grant from NIH, Venter applied for</div> <div> nearly three thousand patents on Expressed Sequence</div> <div> Tags (ESTs). The ESTs located genes but</div> <div> stopped short of identifying gene function. A furor</div> <div> developed when researchers working with government</div> <div> money applied for patents on data that</div> <div> merely reports knowledge of what already exists</div> <div> in nature—knowledge of existing DNA sequences—</div> <div> and this led to the 1992 resignation of</div> <div> James Watson (b. 1928) from the directorship of</div> <div> NIH’s National Center for Human Genome Research</div> <div> (NCHGR). Watson, who along with Francis</div> <div> Crick (b. 1916) is famed for his discovery of the</div> <div> double helix structure of DNA, was the first to</div> <div> head the NCHGR.</div> <div> Venter then established The Institute for Genomic</div> <div> Research (TIGR) and began using Applied</div> <div> Biosystems automatic sequencers twenty-four</div> <div> hours per day to speed up nucleotide sequencing</div> <div> and the locating of ESTs. By 1998 Venter had established</div> <div> Celera Genomics with sequencing capacity</div> <div> fifty times greater than TIGR, and by June 17,</div> <div> 2000, he concluded a ninety percent complete account</div> <div> of the human genome. It was published in</div> <div> the February 16, 2001, issue of <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>Science.</I></FONT></div> <div> Francis Collins (b. 1950) took over NCHGR</div> <div> leadership from Watson and found himself driving</div> <div> the public sector effort, racing with Venter toward</div> <div> the mapping finish line. Collins drew twenty laboratories</div> <div> worldwide with hundreds of researchers</div> <div> into the International Human Genome Sequencing</div> <div> Consortium, which he directed from his Washington</div> <div> office. Collins repudiated patenting of raw genomic</div> <div> data and sought to place DNA data into the public</div> <div> domain as rapidly as possible so as to prevent private</div> <div> patenting. His philosophy was that the human</div> <div> genome is the common property of the whole</div> <div> human race. The public project finished almost simultaneously</div> <div> with the private, and the ninety percent</div> <div> complete Collins map appeared one day prior</div> <div> to Venter’s on February 15, 2001, in <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>Nature.</I></FONT></div> <div> Human DNA, as it turns out, is largely junk—</div> <div> that is, 98.6 percent does not code for proteins.</div> <div> Half of the junk DNA consists of repeated sequences</div> <div> of various types, most of which are parasitic</div> <div> elements inherited from our distant evolutionary</div> <div> past. Only 1.1 percent to 1.4 percent</div> <div> constitute sequences that code for proteins that</div> <div> function as genes.</div> <div> Of dramatic interest is the number of genes in</div> <div> the human genome. At the time of the announcement,</div> <div> Collins estimated there are 31,000 proteinen-coding</div> <div> genes; he could actually list 22,000. Venter</div> <div> could provide a list of 26,000, to which he</div> <div> added an estimate of 10,000 additional possibilities.</div> <div> For round numbers, the estimate in 2001 stood</div> <div> at 30,000 human genes.</div> <div> This is philosophically significant, because</div> <div> when the project began in 1987 the anticipated</div> <div> number of genes was 100,000. It was further assumed</div> <div> that human complexity was lodged in the</div> <div> number of genes: the greater the number of genes,</div> <div> the greater the complexity. So, confusion appeared</div> <div> when, nearing the completion of HGP, scientists</div> <div> could find only a third of the anticipated number.</div> <div> Confusion was enhanced when the human</div> <div> genome was compared to a yeast cell with 6,000</div> <div> genes, a fly with 13,000 genes, a worm with 26,000</div> <div> genes, and a rice cell with 50,000 genes. On the</div> <div> basis of the previous assumption, a grain of rice</div> <div> should be more complex than Albert Einstein.</div> <div> With the near completion of HGP, no longer</div> <div> could human uniqueness, complexity, or even distinctiveness</div> <div> be lodged in the number of genes.</div> <div> Collins began to speculate that perhaps what is</div> <div> distinctively human could be found not in the</div> <div> genes themselves but in the multiple proteins and</div> <div> the complexity of protein production. Culturally,</div> <div> DNA began to lose some of its magic, some of its</div> <div> association with human essence.</div> <bR> <div> <B>The theology and ethics of HGP</b></div> <div> At the outset, HGP scientists anticipated ethical and</div> <div> public policy concerns; they were acutely aware</div> <div> that their research would have an impact on society</div> <div> and were willing to share responsibility for it.</div> <div> When in 1987 James Watson counseled the U.S.</div> <div> Department of Health and Human Services to appropriate</div> <div> the funds for what would become HGP,</div> <div> he recommended that three percent of the budget</div> <div> be allotted to study the ethical, legal, and social implications</div> <div> of genome research. Watson insisted that</div> <div> society learn to use genetic information only in</div> <div> beneficial ways; if necessary, the government</div> <div> should pass laws at both the federal and state levels</div> <div> to prevent invasions of privacy and discrimination</div> <div> on genetic grounds. Moral controversy broke</div> <div> out repeatedly during the near decade and a half</div> <div> of research.</div> <div> Religious responses to the advancing frontier</div> <div> of genetic knowledge emerge mainly from people’s</div> <div> concern to relieve human suffering and employ</div> <div> science to improve human health and well-being.</div> <div> A statement prepared by the National</div> <div> Council of Churches under the leadership of Union</div> <div> Seminary ethicist Roger L. Shinn affirms that</div> <div> churches in the United States must be involved</div> <div> with genetic research and therapy. “The Christian</div> <div> churches understand themselves as communities</div> <div> dedicated to obeying the will of God through service</div> <div> to others. The churches have a particular concern</div> <div> for those who are hurt or whose faith has</div> <div> been shaken, as demonstrated by the long history</div> <div> of the churches in providing medical care .…</div> <div> Moreover, the churches have a mission to prevent</div> <div> suffering as well as to alleviate it.”</div> <div> In 1990 the Center for Theology and the Natural</div> <div> Sciences (CTNS) at the Graduate Theological</div> <div> Union (GTU) in Berkeley, California, obtained one</div> <div> of the first grants offered by the Ethical, Legal, and</div> <div> Social Issues (ELSI) division of NCHGR. A team of</div> <div> molecular biologists, behavioral geneticists, theologians,</div> <div> and bioethicists monitored the first years</div> <div> of HGP research to articulate theological and ethical</div> <div> implications of the new knowledge. Many religious</div> <div> and ethical issues eventually became public</div> <div> policy concerns. These are adumbrated below.</div> <bR> <div> <B>Genetic discrimination. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >When Watson recommended</FONT></div> <div> the establishment of ELSI, the first public</div> <div> policy concern was what he called <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>privacy, </I></FONT>here</div> <div> called <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>genetic discrimination. </I></FONT>An anticipated and</div> <div> feared scenario took the following steps. As researchers</div> <div> identify and locate most if not all genes</div> <div> in the human genome that either condition or, in</div> <div> some cases, cause disease, the foreknowledge of</div> <div> an individual’s genetic predisposition to expensive</div> <div> diseases could lead to loss of medical insurance</div> <div> and perhaps loss of employment opportunities. As</div> <div> HGP progressed, the gene for cystic fibrosis was</div> <div> found on chromosome seven, and Huntington’s</div> <div> chorea on chromosome four. Alzheimer’s disease</div> <div> was sought on chromosome twenty-one, and</div> <div> colon cancer on chromosome two. Disposition to</div> <div> muscular dystrophy, sickle-cell anemia, Tay Sachs</div> <div> disease, certain cancers, and numerous other diseases</div> <div> turned out to have locatable genetic origins.</div> <div> More knowledge is yet to come. When it comes, it</div> <div> may be accompanied by an inexpensive method</div> <div> for testing the genome of each individual to see if</div> <div> he or she has any genes for any diseases. Screening</div> <div> for all genetic diseases may become routine for</div> <div> newborns just as testing for phenylketonuria (PKU)</div> <div> has been since the 1960s. A person’s individual</div> <div> genome might become part of a data bank to</div> <div> which each person, as well as health care</div> <div> providers, would have future access. The advantage</div> <div> is clear: Medical care from birth to grave could</div> <div> be carefully planned to delay onset, appropriately</div> <div> treat, and perhaps even prevent or cure genetically-</div> <div> based diseases.</div> <div> Despite the promise for advances in preventative</div> <div> health care, fear arises due to practices of commercial</div> <div> insurance. Insurance works by sharing risk.</div> <div> When risk is uncertain to all, then all can be asked</div> <div> to contribute equally to the insurance pool. Premiums</div> <div> can be equalized. Once the genetic disorders</div> <div> of individuals become known, however, this could</div> <div> justify higher premiums for those demonstrating</div> <div> greater risk. The greater the risk, the higher the</div> <div> premium. Insurance may even be denied those</div> <div> whose genes predict extended or expensive medical</div> <div> treatment.</div> <div> Some ethicists are seeking protection from discrimination</div> <div> by invoking the principles of confidentiality</div> <div> and privacy. They argue that genetic testing</div> <div> should be voluntary and that the information</div> <div> contained in one’s genome be controlled by the</div> <div> patient. This argument presumes that if information</div> <div> can be controlled, then the rights of the individual</div> <div> for employment, insurance, and medical care can</div> <div> be protected. There are grounds for thinking this</div> <div> approach will succeed. Title VII of the 1964 Civil</div> <div> Rights Act restricts pre-employment questioning</div> <div> about work-related health conditions. Paragraph</div> <div> 102.b.4 of the Act potentially protects coverage for</div> <div> the employee’s spouse and children. Legislative</div> <div> proposals during the 1990s and early 2000s seem</div> <div> to favor privacy.</div> <div> Other ethicists argue that privacy is a misguided</div> <div> cure for this problem. Privacy will fail, say</div> <div> its critics, because insurance carriers will press for</div> <div> legislation fairer to them, and eventually protection</div> <div> by privacy may slip. In addition, computer linkage</div> <div> makes it difficult to prevent the movement of data</div> <div> from hospital to insurance carrier and to anyone</div> <div> else bent on finding out. Most importantly, the privacy</div> <div> argument overlooks the principle that</div> <div> genome information should not finally be restricted.</div> <div> The more society knows, the better the</div> <div> health care planning can be. In the long run, what</div> <div> society needs is information without discrimination.</div> <div> The only way to obtain this is to restructure</div> <div> the employment-insurance-health care relationship.</div> <div> The current structure makes it profitable for</div> <div> employers and insurance carriers to discriminate</div> <div> against individuals with certain genetic configurations—</div> <div> that is, it is in their best financial interest to</div> <div> limit or even deny health care. A restructuring is</div> <div> called for so that it becomes profitable to deliver,</div> <div> not withhold, health care. To accomplish this the</div> <div> whole nation will have to become more egalitarian—</div> <div> that is, to think of the nation itself as a single</div> <div> community willing to care for its own constituents.</div> <bR> <div> <B>The Abortion controversy. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >Given the divisiveness</FONT></div> <div> of the abortion controversy in the United</div> <div> States and certain other countries, fears arise over</div> <div> possible genetic discrimination in the womb or</div> <div> even prior to the womb in the petri dish. Techniques</div> <div> have been developed to examine in vitro</div> <div> fertilized (IVF) eggs as early as the fourth cell division</div> <div> in order to identify so-called defective genes,</div> <div> such as the chromosomal structure of Down</div> <div> syndrome. Prospective parents may soon routinely</div> <div> fertilize a dozen or so eggs in the laboratory,</div> <div> screen for the preferred genetic make up, implant</div> <div> the desired zygote or zygotes, and discard</div> <div> the rest. What will be the status of the discarded</div> <div> embryos? Might they be considered abortions? By</div> <div> what criteria does one define “defective” when</div> <div> considering the future of a human being? Should</div> <div> prospective parents limit themselves to eliminating</div> <div> “defective” children, or should they go on to</div> <div> screen for enhancing genetic traits such as blue</div> <div> eyes or higher intelligence? If so, might this lead to</div> <div> a new form of eugenics, to selective breeding</div> <div> based upon personal preference and prevailing social</div> <div> values? What will become of human dignity</div> <div> in all this?</div> <div> Relevant here is that the legal precedent set by</div> <div> <I>Roe v. Wade </I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >(1973) would not serve to legitimate</FONT></div> <div> discarding preimplanted embryos. This Supreme</div> <div> Court case legalized the use of abortion to eliminate</div> <div> a fetus from a woman’s body as an extension</div> <div> of a woman’s right to determine what happens to</div> <div> her body. This would not apply to preimplanted</div> <div> embryos, however, because they are life forms outside</div> <div> the woman’s body.</div> <div> The Roman Catholic tradition has set strong</div> <div> precedents regarding the practice of abortion. The</div> <div> Second Vatican Council document <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>Gaudium et spes</I></FONT></div> <div> (1965) states the position still held today: “… from</div> <div> the moment of its conception life must be guarded</div> <div> with the greatest care, while abortion and infanticide</div> <div> are unspeakable crimes.” The challenge to ethicists</div> <div> in the Roman Catholic tradition in the near future</div> <div> will be to examine what transpires at the</div> <div> pre-implantation stage of the embryo to determine if</div> <div> the word <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>abortion </I></FONT>applies. If it does, this may lead</div> <div> to recommending that genetic screening be pushed</div> <div> back one step further, to the gamete stage prior to</div> <div> fertilization. The genetic make up of sperm and</div> <div> ovum separately could be screened, using acceptable</div> <div> gametes and discarding the unacceptable. The</div> <div> Catholic Health Association of the United States</div> <div> pushes back still further by recommending the development</div> <div> of techniques of gonadal cell therapy to</div> <div> make genetic corrections in the reproductive tissues</div> <div> of prospective parents long before conception takes</div> <div> place—that is, gametocyte therapy.</div> <bR> <div> <B>Genetic determinism, human freedom, and</b></div> <div> <B>the gene myth. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >Religious thinkers must deal not</FONT></div> <div> only with laboratory science but with the cultural</div> <div> interpretations of science, as well as public policy</div> <div> influenced by both. A cultural myth has grown up</div> <div> with media coverage of the Human Genome Project</div> <div> that assumes “it’s all in the genes.” DNA has</div> <div> emerged as a cultural icon, holding the “blueprint”</div> <div> for humanity or being thought of as the “essence”</div> <div> of what makes a person a person. Even though</div> <div> molecular biologists withdraw from such extreme</div> <div> forms of genetic determinism, a cultural myth has</div> <div> arisen. Some commentators refer to it as the <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>strong</I></FONT></div> <div> <I>genetic principle</I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >; others call it the </FONT><I>gene myth.</I></div> <bR> <div> <B>Genes, sin, crime, and racial discrimination.</b></div> <div> The belief in determinism promulgated by the</div> <div> gene myth raises the question of moral and legal</div> <div> culpability. Does a genetic disposition to antisocial</div> <div> behavior make a person guilty or innocent before</div> <div> the law? Over the next decade legal systems will</div> <div> have to face a rethinking of the philosophical</div> <div> planks on which concepts such as free will, guilt,</div> <div> innocence, and mitigating factors have been constructed.</div> <div> There is no question that research into</div> <div> the connection between genetic determinism and</div> <div> human behavior will continue and new discoveries</div> <div> will become immediately relevant to the prosecution</div> <div> and defense of those accused of crimes. The</div> <div> focus will be on the concept of free will, because</div> <div> the assumption of the Western philosophy coming</div> <div> down from Augustine that underlies understanding</div> <div> of law is that guilt can only be assigned to a</div> <div> human agent acting freely. The specter on the genetic</div> <div> horizon is that confirmable genetic dispositions</div> <div> to certain forms of behavior will constitute</div> <div> compulsion, and this will place a fork in the legal</div> <div> road: Either the courts declare the person with a</div> <div> genetic disposition to crime to be innocent and set</div> <div> him or her free, or the courts declare him or her so</div> <div> constitutionally impaired as to justify incarceration</div> <div> and isolation from the rest of society. The first fork</div> <div> would jeopardize the welfare of society; the second</div> <div> fork would violate individual rights.</div> <div> That society needs to be protected from criminal</div> <div> behavior, and that such protection could be</div> <div> had by isolating individuals with certain genetic</div> <div> dispositions, leads to further questions regarding</div> <div> insanity and race. The issue of insanity arises because</div> <div> the genetic defense may rely upon precedents</div> <div> set by the insanity defense. The courts treat</div> <div> insanity with a focus on the insane person’s inability</div> <div> to distinguish right from wrong when committing</div> <div> a crime. When a defendant is judged innocent</div> <div> on these grounds, he or she is incarcerated in a</div> <div> mental hospital until the medical evaluators judge</div> <div> that the individual is cured. Once cured, the person</div> <div> may be released. In principle, such a person</div> <div> might never be judged “cured” and may spend</div> <div> more time in isolation than the prison penalty prescribed</div> <div> for the crime, maybe even the rest of his or</div> <div> her life. Should the genetic defense tie itself to the</div> <div> insanity defense, and if one’s DNA is thought to</div> <div> last a lifetime, then the trip to the hospital may become</div> <div> the equivalent of a life sentence. In this way</div> <div> the genetic defense may backfire.</div> <div> With this prospect, we have returned to the</div> <div> specter of genetic discrimination. The current discussion</div> <div> of possible genetic influence on antisocial</div> <div> behavior is riddled with fears of discrimination, especially</div> <div> its racial overtones. Because the percentage</div> <div> of black men among the population of incarcerated</div> <div> prisoners is growing, society could invoke</div> <div> the gene myth to associate genes with criminal</div> <div> predispositions and with race. A stigma against</div> <div> black people could arise, a presumption that they</div> <div> are genetically predisposed to crime. University of</div> <div> California sociologist Troy Duster fears that if we</div> <div> identify crime with genes and then genes with</div> <div> race, we may inadvertently provide a biological</div> <div> support for prejudice and discrimination.</div> <bR> <div> <B>The gay gene. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >Theological and ethical debate</FONT></div> <div> has arisen over the 1993 discovery of a possible</div> <div> genetic disposition to male homosexuality. Dean</div> <div> H. Hamer and his research team at the U.S. National</div> <div> Cancer Institute announced that they discovered</div> <div> evidence that male homosexuality—at least</div> <div> some male homosexuality—is genetic. Constructing</div> <div> family trees in instances where two or more</div> <div> brothers are gay combined with actual laboratory</div> <div> testing of homosexual DNA, Hamer located a region</div> <div> near the end of the long arm of the X chromosome</div> <div> that likely contains a gene influencing</div> <div> sexual orientation. Because men receive an X chromosome</div> <div> from their mother and a Y from their father</div> <div> (women receive two X’s, one from each parent),</div> <div> this means that the possible gay gene is</div> <div> inherited maternally. Mothers can pass on the gay</div> <div> gene without themselves or their daughters being</div> <div> homosexual. A parallel study of lesbian genetics is</div> <div> as yet incomplete; and the present study of gay</div> <div> men will certainly require replication and confirmation.</div> <div> Scientists do not yet have indisputable</div> <div> proof.</div> <div> The ethical implications, should a biological</div> <div> basis for homosexuality be confirmed, could point</div> <div> in more than one direction. The scientific fact does</div> <div> not itself determine the direction of the ethical interpretation</div> <div> of that fact. The central ethical question</div> <div> is this: Does the genetic disposition toward</div> <div> homosexuality make the bearer of that gene innocent</div> <div> or guilty? Two answers are logically possible.</div> <div> On the one hand, a homosexual man could</div> <div> claim that because he inherited the gay gene and</div> <div> did not choose a gay orientation by his own free</div> <div> will, he is innocent. The biological innocence position</div> <div> could be buttressed by an additional argument</div> <div> that homosexual activity is not itself sinful; it</div> <div> is simply one natural form of sexual expression</div> <div> among others. One could go still further to say that</div> <div> because it is biologically inherited that it is God’s</div> <div> will; that a person’s homosexual predisposition is</div> <div> God’s gift.</div> <div> On the other hand, one could follow the opposite</div> <div> road and identify the gay gene with a carnal</div> <div> disposition to sin. Society could claim that the</div> <div> body inherited by each person belongs to who</div> <div> they are—people are determined at least in part by</div> <div> what their parents bequeathed them—and that an</div> <div> inherited disposition to homosexual behavior is</div> <div> just like other innate dispositions such as lust or</div> <div> greed, which are shared with the human race generally;</div> <div> all this constitutes the state of original sin</div> <div> into which we are born. Signposts point in both</div> <div> ethical directions.</div> <div> Beyond the question of guilt or innocence</div> <div> ethicists anticipate another issue, namely, the risk</div> <div> of stigma. Might the presence of the gay gene in</div> <div> an unborn fetus be considered a genetic defect</div> <div> and become grounds for abortion? Would routine</div> <div> genetic testing lead to a wholesale reduction of</div> <div> gay men in a manner parallel to that of children</div> <div> with Down Syndrome? Would this count as class</div> <div> discrimination?</div> <bR> <div> <B>Somatic therapy versus germline enhancement.</b></div> <div> The debate over two distinctions—somatic</div> <div> versus germline intervention and therapy</div> <div> versus enhancement intervention—involves both</div> <div> secular and religious discussions. The term <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>somatic</I></FONT></div> <div> <I>therapy </I><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >refers to the treatment of a disease</FONT></div> <div> in the body cells of a living individual by trying to</div> <div> repair an existing defect. The term <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>germline therapy</I></FONT></div> <div> refers to intervention into the gametes, perhaps</div> <div> for the purpose of eliminating a gene such as</div> <div> that for cystic fibrosis so that it would not be</div> <div> passed along to future generations. Both somatic</div> <div> and germline therapies are conservative when</div> <div> compared to genetic enhancement. Enhancement</div> <div> goes beyond mere therapy for existing genes that</div> <div> may be a threat to health by selecting or adding</div> <div> genes to make an individual “superior” in some</div> <div> fashion. Enhancement might involve genetic engineering</div> <div> to increase bodily strength or intelligence</div> <div> or other socially desirable characteristics.</div> <div> Ethical commentators almost universally agree</div> <div> that somatic therapy is morally desirable, and they</div> <div> look forward to the advances HGP will bring for</div> <div> expanding this important work. Yet they stop short</div> <div> of endorsing genetic selection and manipulation</div> <div> for the purposes of enhancing the quality of biological</div> <div> life for otherwise normal individuals or for</div> <div> the human race as a whole. New knowledge</div> <div> gained from HGP might locate genes that affect</div> <div> the brain’s organization and structure so that careful</div> <div> engineering might lead to enhanced ability for</div> <div> abstract thinking or to other forms of physiological</div> <div> and mental improvement.</div> <div> Religious ethicists argue that somatic therapy</div> <div> should be pursued, but enhancement through</div> <div> germline engineering raises cautions about</div> <div> protecting human dignity. In a 1982 study, the</div> <div> World Council of Churches stated: “Somatic cell</div> <div> therapy may provide a good; however, other issues</div> <div> are raised if it also brings about a change in germline</div> <div> cells. The introduction of genes into the</div> <div> germline is a permanent alteration .… Nonetheless,</div> <div> changes in genes that avoid the occurrence of</div> <div> disease are not necessarily made illicit merely because</div> <div> those changes also alter the genetic inheritance</div> <div> of future generations .… There is no absolute</div> <div> distinction between eliminating defects and</div> <div> improving heredity” (quoted in Peters, ed., 1998,</div> <div> pp. 6–8). The primary caution raised by the WCC</div> <div> here has to do with the lack of knowledge regarding</div> <div> the possible consequences of altering the</div> <div> human germline. The present generation lacks sufficient</div> <div> information regarding the long term consequences</div> <div> of a decision today that might turn out to</div> <div> be irreversible tomorrow. Thus, the WCC does not</div> <div> forbid forever germline therapy or even enhancement;</div> <div> rather, it cautions people to wait and see.</div> <div> The Catholic Health Association is more positive:</div> <div> “Germline intervention is potentially the only</div> <div> means of treating genetic diseases that do their</div> <div> damage early in embryonic development, for</div> <div> which somatic cell therapy would be ineffective.</div> <div> Although still a long way off, developments in molecular</div> <div> genetics suggest that this is a goal toward</div> <div> which biomedicine could reasonably devote its efforts”</div> <div> (p. 19)</div> <div> Another reason for caution regarding germline</div> <div> enhancement, especially among the Protestants, is</div> <div> the specter of eugenics. The word <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>eugenics </I></FONT>connotes</div> <div> the ghastly racial policies of Nazism, and this</div> <div> accounts for much of today’s mistrust of genetic</div> <div> science in Germany and elsewhere. No one expects</div> <div> a resurrection of the Nazi nightmare; yet</div> <div> some critics fear a subtle form of eugenics slipping</div> <div> in the cultural back door. The growing power to</div> <div> control the design of living tissue will foster the</div> <div> emergence of the image of the “perfect child,” and</div> <div> a new social value of perfection will begin to oppress</div> <div> all those who fall short.</div> <bR> <div> <B>Gene patenting. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >A controversy exploded in</FONT></div> <div> 1991 over gene patenting prompted by the filing</div> <div> for intellectual property rights by J. Craig Venter on</div> <div> nearly three thousand ESTs, expressed sequence</div> <div> tags. Each of these ESTs consisted of three hundred</div> <div> to five hundred base pairs made from cDNAs,</div> <div> copies of DNA sequences produced by polymerase</div> <div> chain reaction. ESTs are gene fragments, not whole</div> <div> genes; hence they mark the location of a gene but</div> <div> cannot identify gene function. Two issues became</div> <div> the focus of controversy. First, should the U.S.</div> <div> Patent and Trademark Office grant patents on genomic</div> <div> data? Even though the patents applied for</div> <div> were on copies of DNA sequences, their only</div> <div> value was to report raw genomic information. It</div> <div> appeared to critics that these applications failed to</div> <div> meet the three patenting criteria: novelty, utility,</div> <div> and non-obviousness. Second, should the U.S. government</div> <div> apply for and receive such patents in</div> <div> competition with the private sector? Venter’s first</div> <div> patent applications were filed while he was working</div> <div> on a government grant; later he moved to the</div> <div> private sector and continued filing for intellectual</div> <div> property rights on his discoveries. James Watson</div> <div> followed by Francis Collins at the NIH both opposed</div> <div> patenting raw genomic data.</div> <bR> <div> <B>Cloning. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >Technically known as “somatic cell nuclear</FONT></div> <div> transfer,” cloning techniques were developed</div> <div> in 1996 by Ian Wilmut at the Roslin Institute near</div> <div> Edinburgh, Scotland. Wilmut announced the</div> <div> cloning of Dolly the sheep in February 1997. The</div> <div> scientific breakthrough consisted of returning an</div> <div> already differentiated DNA nucleus to its pre-differentiated</div> <div> state and then transferring it to an ennucleated</div> <div> oocyte to make an embryo. The new</div> <div> embryo thus contains the genome of the donor nucleus.</div> <div> In the worldwide controversy that broke out</div> <div> in 1997 and continues in bioethical discussion, the</div> <div> debate seems to bypass the science of nuclear</div> <div> transfer; rather, the focus is on producing multiple</div> <div> human beings with duplicate genomes. Critics of</div> <div> reproductive cloning argue that children produced</div> <div> by cloning would suffer from loss of individuality,</div> <div> identity, and dignity. Roman Catholic critics along</div> <div> with Wilmut himself oppose human reproductive</div> <div> cloning on the grounds of safety—that is, the imperfect</div> <div> technology would lead to the destruction</div> <div> of many early embryos. Defenders of nuclear</div> <div> transfer research distinguish sharply between reproductive</div> <div> cloning, which they oppose, and therapeutic</div> <div> cloning, which is necessary for stem cell</div> <div> research.</div> <bR> <div> <B>Stem cells. </b><FONT SIZE="3" COLOR="#000000" FACE="Garamond-Light" >The isolation of human embryonic</FONT></div> <div> stem cells (hES cells) was accomplished in August</div> <div> 1997 by James Thomson at the University of Wisconsin</div> <div> on funds from the Geron Corporation. The</div> <div> hES cells are removed from the inner mass of the</div> <div> blastocyst, an embryo at four to six days old. When</div> <div> isolated and placed on a feeder tray, hES cells</div> <div> become immortal—that is, they divide indefinitely.</div> <div> In addition, they are pluripotent and able to</div> <div> differentiate into any and every tissue. The research</div> <div> goal is to control gene expression so as to</div> <div> make designated tissue for rejuvenating human organs.</div> <div> Some progress in gene control has been</div> <div> achieved. The next hurdle to jump is histocompatibility,</div> <div> namely, to avoid organ rejection by matching</div> <div> donor and recipient genetic codes. It is likely</div> <div> that experiments with somatic cell nuclear transfer</div> <div> will be required to attain histocompatibility. Ethical</div> <div> objections to stem cell research from Roman</div> <div> Catholics center on destruction of blastocysts</div> <div> for research purposes. Ethical support for stem cell</div> <div> research stresses beneficence; it emphasizes</div> <div> the marvelous advances in human health and wellbeing</div> <div> that this medical science might offer the</div> <div> human race.</div> <bR> <div> <B>Conclusion: theological commitments to</b></div> <div> <B>human dignity</b></div> <div> Virtually all Roman Catholics and Protestants who</div> <div> take up the challenge of the new genetic knowledge</div> <div> seem to agree on a handful of theological axioms.</div> <div> First, they affirm that God is the creator of</div> <div> the world and, further, that God’s creative work is</div> <div> ongoing. God continues to create in and through</div> <div> natural genetic selection and even through human</div> <div> intervention in the natural processes. Second, the</div> <div> human race is created in God’s image. In this context,</div> <div> the divine image in humanity is tied to creativity.</div> <div> God creates; so do human beings. With increasing</div> <div> frequency, humans are described by</div> <div> theologians as <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>co-creators </I></FONT>with God, making their</div> <div> human contribution to the evolutionary process. In</div> <div> order to avoid the arrogance of thinking that humans</div> <div> are equal to the God who created them in</div> <div> the first place, people must add the term <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>created </I></FONT>to</div> <div> make the phrase <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>created co-creators. </I></FONT>This emphasizes</div> <div> human dependency on God while pointing</div> <div> to human opportunity and responsibility. Third,</div> <div> these religious documents place a high value on</div> <div> human dignity.</div> <div> By <FONT SIZE="3" COLOR="#000000" FACE="Garamond-LightItalic" ><I>dignity </I></FONT>they mean what eighteenth-century</div> <div> German philosopher Immanuel Kant meant,</div> <div> namely, that each human being is treated as an</div> <div> end, not merely as a means to some further end.</div> <div> As church leaders respond responsibly to new</div> <div> developments in HGP, one thing can be confidently</div> <div> forecast: This affirmation of dignity will become</div> <div> decisive for thinking through the ethical implications</div> <div> of genetic engineering. Promoting</div> <div> dignity is a way of drawing an ethical implication</div> <div> from what the theologian can safely say, namely,</div> <div> that God loves each human being regardless of his</div> <div> or her genetic makeup and, therefore, people</div> <div> should love one another according to this model.</div> </td> </tr></table></body>