Hat Is Positive Again Think in Terms of Addition Eugenics

On April 25th of this twelvemonth [2003], nosotros celebrated the fiftieth ceremony of the elucidation of the construction of DNA past Watson and Crick, an accomplishment of which we are all extremely proud—and justifiably so. A vast amount is existence written and said nigh the significance of this discovery and nearly where genetics in general, and homo genetics in item, are at present and where they are going. The Majestic Post of the United Kingdom even issued a ready of stamps to honor the occasion too as the completion of the Human Genome Project. The stamps characteristic cute cartoons nearly genetics, and the cancellation on the first day comprehend uses a quotation from James Watson: "Our fate is in our genes" (Fig. 1). This is an interesting choice, because to many human geneticists this notion has a very deterministic ring nigh it, ane from which they are trying to distance themselves.

Fig. 1
figure 1

Kickoff day cover of stamps issued by the Purple Mail to commemorate the 50th anniversary of the discovery of the structure of Deoxyribonucleic acid and the completion of the Homo Genome Project. "The Secret of Life" Stamps and First Mean solar day Comprehend ©Royal Mail service Group pic 2003. Reproduced past kind permission of Royal Mail. All rights reserved.

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Along with the celebration, there has been much speculation about what the future will bring. For example, the next 50 years will bring, according to Time 'southward consultants, food without fatty, cellular therapies and new organs, the $100 personal genome, slowing of the aging procedure, germ-line genetic technology, and reverse engineering of the human brain. i As might be expected, speculations such as these have engendered considerable concern—how much, how fast? ii What are the ethics and morality of making new and better babies? Is this a return to the eugenics thinking of the past?

In 1990, in a volume describing his view of human genetics, Berkeley sociologist Troy Duster spoke about a back door to eugenics, one that is fabricated up of "screens, treatments, and therapies,"3 and a few years later, Arthur Dyck, a professor of ethics at Harvard, wrote the post-obit: Science, medicine and law at present willingly provide the information, rationale, and technical know-how for current eugenic practices in the U.s.a., some of them quite coercive and arguably unethical… Eugenics is not simply a thing of history. Eugenics is practiced today… [and] the very ideas and concepts that informed and motivated German language physicians and the Nazi state are in identify. iv

Dyck and Squeegee were not lonely in telling us that eugenics is actively being pursued in the practice of human and medical genetics. For instance, Dorothy Wertz said information technology outright: "Eugenics is alive and well."v The basis for her assertion is that, whereas but some geneticists regard what they are doing as being eugenics, counseling for prenatal diagnosis is "pessimistically biased" or "slanted" and counselors have a "pessimistic view of persons with disabilities,"—perhaps not so much in the English language-speaking countries, but certainly in the rest of the earth. Similarly, Science, in reporting a survey on cloning, tells us that "eugenics is gaining broader acceptance overall," in this example equating eugenics with prenatal diagnosis for desirable traits and the apply of genetic engineering to produce these traits. half dozen And, in a comment cited in an article reporting that the governor of Virginia recently apologized for Virginia'southward 1924 law authorizing involuntary sterilization for eugenic purposes, Barbara Bieseker is quoted to the effect that prenatal diagnosis may be operating in a "milieu of personal eugenics."7

The worst allegation that can be leveled against mod human genetics and medical genetics is that they are eugenic—if not a literal return to the eugenics of the past, at least a reincarnation of that eugenics in a new guise. The mere employ of the word "eugenics" brings forth very visceral responses. Richard Dawkins, of The Selfish Cistron fame, tells united states that, "If cannibalism is our greatest taboo, positive eugenics… is a candidate for the second… In our time, the discussion [eugenics] has a chilling band. If a policy is described as 'eugenic,' that is enough for most people to rule it out at in one case…."8 And, according to Diane Paul, "the term is wielded like a club. To label a policy 'eugenics' is to say, in outcome, that it is not just bad but beyond the stake."nine

How should we respond?

I must confess that I was quite taken aback when I outset heard human genetics being equated with eugenics. Indeed, several years ago when the American Society of Human Genetics was discussing the 1994 Chinese eugenics constabulary, ten it did not really occur to me that anyone would construe what human and medical geneticists were doing in the United States equally being eugenic. My offset response was to deny the eugenics association out of mitt, thinking that it might exist more an issue of semantics than of substance. And so, when I began to look further into the matter, I went through a period of self-incertitude and disbelief, perhaps even guilt, and I establish myself beginning to place with the critics and to question everything that I had taken for granted.

Withal, with the passage of time, I regained my sense of balance and, while acknowledging that the critics have raised many important problems, came to the determination that the homo genetic enterprise is basically sound. I also came to the realization that if human being and medical geneticists are to make an constructive response to the critics, they—and they are we—must outset mind carefully and nondefensively to what they have to say. I think that nosotros should try to avoid the stance that some of our most prominent scientists took when confronted with public business organisation about recombinant Dna research. 11 Their approach was to attribute the public'due south reservations to a combination of antiscience and ignorance. There's goose egg incorrect with us—it's the remainder of the globe that's wrong! At that place may well be kernels of truth in what they said, but I do non think that making the antiscience claim is going to be a productive mode to bargain with the issues, and it certainly will non resolve them. A better response would accept been be to ask whether the allegation is a meaningful one, whether, in our case, information technology is really truthful that we are setting goals and engaging in practices that could—perhaps "should" would be a better give-and-take—exist considered equally eugenic.

What is eugenics?

The term "eugenic," originally suggested about 1883 by Galton, literally ways "well-built-in," and if we were dealing with only this definition, at that place would mayhap exist little to talk nigh. Much of what is done in life has but this goal in mind—to have healthy children gratis of disease and with prospects of leading productive and fulfilling lives. If looked at this way, most homo societies could be regarded as being eugenic, with their members taking a large number of steps to increase the likelihood that their children will indeed exist well-born, even though none of these activities has historically been regarded as beingness eugenic.

But, the definition of eugenics goes beyond well-born and introduces the notion of procedure as well as intention, of what nosotros are willing to do to ensure that the children will be well-born (Fig. 2). Thus, even in Galton's original usage, the concepts of "cultivation of race" and the production of "men of a high type" were nowadays. 12 In mod dictionaries, "eugenic" is defined as "relating to the production of good offspring," and "eugenics" as "a scientific discipline that deals with the comeback (every bit by the control of human mating) of hereditary qualities of a race or breed."13 Thus, the emphasis is on the control of the genetic backdrop of futurity offspring. Furthermore, it is implicit in all definitions that the traits that are the subjects of concern are indeed under genetic command and that they tin be altered past making genetic changes and past improving the quality of the genetic pool. Social and other environmental factors were thought to accept relatively piffling effect.

Fig. 2
figure 2

Conceptual scheme of eugenics.

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The early concepts of eugenics as developed principally in England were derived from the belief that the upper (Anglo-Saxon) social classes were in danger of being diluted by the expansion, because of their higher birth rates, of the lower social classes and the allegedly inferior races. Galton's proposed solution to the trouble was along the lines of positive eugenics—the encouragement of the convenance of those among the upper classes who possessed the desirable characteristics. However, he besides allowed for more than than that—for, as he put it, "whatever tends to give the more suitable races or strains of blood a amend chance of prevailing over the less suitable than they otherwise would have had."xiv (p30) Thus, fifty-fifty if the original notion was of positive eugenics, the actual implementation of eugenic principles very speedily began to run along negative eugenic lines. Rather than permit the Darwinian survival of the fittest to control the gene pool, the object was to ensure the nonsurvival of those considered to be unfit.

The main means of implementing negative eugenics were past discouraging or preventing the reproduction of the unfit past prevention of wedlock and of racial mixing, institutionalization, sterilization, and sometimes castration (Fig. three). Added to this were quotas on the immigration of the supposed unfit and a general stigmatization of and bigotry against them. And, if this was non sufficient, abortion was employed to foreclose their birth. Although all of this was theoretically voluntary, it rapidly became compulsory in many countries abroad and in many states in the United States.

Fig. 3
figure 3

Implementation of negative eugenics in many countries and states.

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Nevertheless, information technology is, of grade, in Nazi Germany that eugenics reached its ultimate and nigh terrible application—the Holocaust, with its wholesale extermination of millions of Jews, gypsies, homosexuals, mentally retarded, epileptics, mentally ill, and others deemed unworthy of life and certainly of reproduction (Fig. 4). This was to be the ultimate cleansing of the gene pool. No longer was breeding of the undesirable to be controlled—rather, the breeders who were thought to carry the undesirable genes were to be eliminated altogether.

Fig. 4
figure 4

Implementation of negative eugenics in Nazi Germany.

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As this mainline eugenics was flourishing in Nazi Federal republic of germany, its popularity in other countries was decreasing. It was replaced by a and so-chosen "reform eugenics," which did not include the Nazi arroyo and called into question the unscientific footing of much of the original eugenics and rejected the blatant racism and antifeminism that characterized it. However, this was not a rejection of the basic goal of eugenics but only of the excesses and unscientific attitudes that characterized it. So, despite the change in attitudes, laws providing for voluntary (although very often coerced) and compulsory sterilization were passed in more than one-half of the American states and in several countries of Northern Europe, and sterilizations under these laws were carried out into the 1960s—right here in San Diego [the city in which this address was given]! 15

In the latest iteration of reform eugenics, it was argued that what was required was a combined positive and negative eugenic arroyo—increasing the proportion of children born to those who reach virtually and decreasing the proportion of children born to those with least accomplishment, all of this to be voluntary, of form. sixteen In addition, there was to be a voluntary reduction of the incidence of deleterious genes by means of the heredity clinic (which is equated to genetic counseling), institutional care, and the expanded employ of contraception (Fig. 5). And, lest there be any misunderstanding, modern genetic counseling is described as existence "in a special sense a eugenic activity… a form of negative eugenics, in that it attempts to forestall the conception or nativity of individuals with most serious forms of maldevelopment…"17

Fig. 5
figure 5

Reform eugenics, as viewed by Osborn. 16,17

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Eugenics every bit adept was intrinsically wrong

Given its history, at that place is no question that eugenics equally it was actually practiced was wrong. Whether positive or negative, it violated fundamental human rights in numerous ways. It was coercive, discriminatory, and racist. It substituted control by the state for personal choice and autonomy. Information technology denigrated and stigmatized the disabled and others accounted, for whatever reasons, as being unfit. It deprived people of their ability to reproduce, of their freedom, and, in the extreme, of their lives. The effects of the various eugenics movements were widespread, and they ranged from terrible to horrific.

Eugenics as conceived was intrinsically incorrect

Non only was eugenics flawed in its applications, information technology was flawed in its basic genetic assumptions. The first was the belief in genetic determinism, the belief that all of the undesirable diseases and traits that the eugenicists were anxious to eliminate were genetically predetermined and, equally a outcome, not alterable by ecology amending. This notion is a major conceptual foundation for eugenics and, like eugenics, is a target for attack in its own right. The second flaw was the assumption that there were simple genetic explanations—in the extreme, recessive inheritance—for many, if not all of the traits of greatest interest to the eugenicists—criminality, alcoholism, psychiatric illness, and mental retardation. Indeed, as eminent a geneticist as R.A. Fisher argued that the incidence of "feeblemindedness" could be reduced past every bit much every bit 17% to 36% in i generation past "segregation or sterilization" of affected individuals. 18

In add-on to being genetically wrong, eugenics as originally conceived was also morally wrong. This was the conclusion reached past Buchanan, Brock, Daniels, and Wikler who conducted an interesting upstanding autopsy of eugenics. fourteen In this autopsy, they considered many issues of importance to ethicists, the most important to them existence the consequence of justice, and this is what they had to say:

The eugenics movements of 1870–1950 insisted… that humankind… stood to gain a big benefit (more able, fit people) if humans would submit to the kind of convenance programs that had been used to meliorate plants and livestock. But who would benefit, and at whose expense? The internal logic of eugenics provides the answer. The "underclass" is simultaneously the group of people whose genes were not wanted and the people who, through involuntary sexual segregation, stigmatization and denigration, sterilization, and even murder, paid the price. The injustice of this distribution of benefits and burdens is evident. 14 (p42–55)

From this and the considerations discussed earlier, I think that it is fair to conclude that eugenics both every bit really adept and equally originally conceived was intrinsically wrong, and I now desire to turn to the question posed in the title of this accost: is modern genetics the new eugenics? This is indeed a very broad question, and I shall restrict myself to consideration of but ane aspect of mod medical genetics: prenatal diagnosis. The questions and so are whether prenatal diagnosis is eugenics and, more specially, whether information technology manifests the attributes that made eugenics intrinsically wrong.

Is prenatal diagnosis eugenics?

In the strictest sense, the question of whether prenatal diagnosis is eugenics translates into another question: does prenatal diagnosis seek to ensure the birth of well-born children? The answer is quite straight forrard: yes, it does indeed seek to ensure the birth of well-built-in children! However, if we become to the broader conception of eugenics as seeking to improve the genetic qualities of populations, the answer is clearly no! Populations and gene pools are non the betoken at outcome.

So much for definitions! We can and then ask whether prenatal diagnosis is based on the basic assumptions underlying the eugenics of the past—unproven genetic mechanisms and genetic determinism. As currently practiced, the reply again is no.

However, these are non really the nigh important questions. The real result is whether prenatal diagnosis as presently practiced exhibits the attributes that made the practice of eugenics wrong in the past: coercion and abrogation of reproductive liberty, country control, bigotry and racism, denigration and stigmatization of the disabled, and deprivation of life. Let'due south consider each of these in plow, starting with the matter of coercion.

Several commentators have suggested that prenatal diagnosis and selective abortion are subject area to a variety of forces that are coercive in nature. Their concerns tin be summarized in five statements:

What is routine is, past its very nature, coercive. The very fact that prenatal diagnosis and screening are widely available may be considered every bit implying that they should be used. nineteen

The context in which they are operating prevents counselors from being truly even-handed and unbiased when laying out possible options. The existence of a exam may be regarded every bit implying not only that it should be used, only too that the condition being screened or tested for is one that should be avoided. Therefore, fifty-fifty with the all-time of intentions, information technology is claimed, counselors cannot truly human activity in a nondirective fashion when information technology comes to helping the potential parents to decide whether testing should be done at all or, if an adverse test outcome is obtained, whether the pregnancy should be terminated. iii,xx,21

Force per unit area to be tested is exerted past those who offer prenatal testing, often for their own purposes. This is based on the assertion that the rationale for offering prenatal diagnosis and screening is not only or even really medical, just also legal—to ward off potential malpractice suits. 4

When fetal abnormality is detected, at that place may be medical or social pressure to abort the pregnancy. Although this force per unit area may sometimes be overt, for most pregnant women with abnormal fetuses, any external pressure to abort is more probable to be the result of perceived societal pressure against having abnormal babies. xix,22,23

Fifty-fifty in the absence of external force per unit area, the process of prenatal diagnosis has an internal momentum that drives toward ballgame. Given what has already been said about what the existence and performance of prenatal testing imply, the contention that "it is very hard to become off the roller coaster in one case embarked" can readily exist understood. With minor exceptions, the procedure is usually undertaken with the expectation—implicit if not explicit—that abortion will exist the probable outcome if fetal abnormality is diagnosed. 19

In sum, then, although there is no claim that women are truly coerced into undergoing prenatal diagnosis, I do not think that we can avoid the fact that there are indeed forces at work, some subtle and others not so subtle, that do exert a coercive forcefulness toward utilization of prenatal diagnosis and termination of pregnancy if an abnormal fetus—notwithstanding that is defined—is detected.

As you can see from this listing, the genetic counselor is perceived equally playing a major role in the prenatal diagnosis process and his or her power to exist neutral or impartial, as current dogma requires, has been chosen into question. Just what the counselor should be doing is, of class, a very major question.

I now turn to the 2nd negative attribute of eugenics exercise and inquire the post-obit question: what is at the role of the authorities in prenatal diagnosis? With the possible exception of China and a few other countries, governments do not appear to be mandating prenatal diagnosis and selective ballgame. Notwithstanding, governments are very much in the business of prenatal diagnosis, and it is necessary to consider why this is. Troy Squeegee capsulates the issue very neatly: When the country pays for genetic screening, counseling, and treatment, it becomes the "third party" in the transaction. Here is the concluding inherent contradiction: the state cannot both (a) insist that such genetics disorder control programs are designed to assist the individual, whatsoever his or her choice, and and so (b) argue cost effectiveness of service utilization on the grounds that such services as utilized in the aggregate cost the public less money. 3 (p76)

This contradiction that has troubled me quite a bit, and the paragraph above a tabular array from a report on the California triple mark screening program is an instance of what about it has troubled me. 24 "It is useful to reflect on the missed opportunities for the abstention of nativity defects…." And what missed opportunities are being spoken about? The table make this clear—they are the numbers of women who did not elect to terminate a pregnancy after the detection of an abnormal fetus—well-nigh fifty% overall with a chromosomal abnormality and 30% with a neural tube defect. However, Cunningham and Tompkinson 24 are probably correct in asserting that toll-do good analyses of genetic services are probably hither to stay, and the New England Regional Genetics Group Social and Ethical Concerns Committee 25 agrees. Therefore, it would be well if the cautions of this group could exist heeded. They point out that cost-benefit analyses endeavour to catechumen seemingly incommensurable units (cost and benefits to patients, families, and club) solely to monetary terms. In doing so, they have several ethical limitations, in detail the frequent overlooking or inadequate weighting of nonmonetary costs and benefits and the omission of considerations of equity and fairness considering costs and benefits are aggregated beyond all individuals concerned. The latter results in benefits to individuals being compared with benefits to order, a state of affairs that may not be the most ethical ane if the interests of club are regarded equally paramount. Genetics, which deals with analysis of risk and variable outcomes, is considered to be "particularly recalcitrant to authentic and value-neutral" analysis.

Nevertheless, perhaps we need to look by the rhetoric and consider what might be accomplished. If nosotros can agree that information technology is good to give prospective mothers the opportunity to have their pregnancies tested—if that is what they truly wish, if their choice to do and so is truly informed and voluntary, and if they fully sympathize the implications of being tested—then perchance we tin look beyond the toll-benefit analyses and accept the country-run screening programs on that basis. If such analyses are what are needed to satisfy the requirements of governmental due diligence, so be it, but let us not believe that they are what truly matters.

I am going to skip over the issue of bigotry since I do non meet it equally a major problem except perchance in a opposite context. If bigotry exists it is that certain ethnic groups are bring denied access to prenatal diagnostic services rather than being forced to undergo it. Even so, the adjacent question is of paramount importance: does prenatal diagnosis denigrate and stigmatize the disabled? Prenatal diagnosis programs, notwithstanding they may exist justified, conspicuously practice have as their goal the prevention of the birth of children with various types of disability. Similarly, even if non targeted against specific racial or ethnic groups, negative eugenic policies were certainly aimed at persons with disabilities, particularly those associated with mental retardation and illnesses believed to be hereditary. Information technology is, therefore, not difficult to understand how prenatal diagnosis has been viewed as allying itself with the eugenic denigration of the disabled and as implying (rather than stating openly, as did many of the eugenic programs of the past) several negative things most the disabled: that they, rather than their disability or their treatment by guild, are the trouble 26; that they are less desirable members of gild and thus have no place in our society 24,28; that disability is inherently bad and that people with disabilities pb blighted, tragic lives 27; and that their lives are not worth living and, therefore, that they should non exist. 21,29

Therefore, the critics believe, the new genetics and sometime eugenics are non very unlike in that they both promote exclusion of the disabled rather than inclusion. 14 Accusations against prenatal diagnosis and genetic counseling based on these types of thinking have been made by several groups of persons with congenital conditions [I had to grab myself when I was writing this. I originally wrote "defects," a clearly prejudicial term in the nowadays context.], particularly by persons with dwarfism, spina bifida, and deafness, besides every bit by the broader inability rights community. To get a real sense of how a group of disabled person feels, we should await at the Position Statement on Genetic Discoveries in Dwarfism posted by the Little People of America (LPA) on their Spider web site:

What will be the touch of the identification of the genes causing dwarfism, not only on our personal lives simply on how club views us as individuals?… Some members [of LPA] were excited almost the developments that led to the understanding of the cause of their conditions, along with the possibility of not having to endure a pregnancy resulting in the infant's death [from homozygous achondroplasia]. Others reacted with fearfulness that the knowledge from genetic tests such as these will exist used to terminate afflicted pregnancies and therefore take the opportunity for life away from ourselves and our children. xxx

The Piffling People of America accept had a long and positive history of interactions with medical genetics. Therefore, i cannot read such a statement without coming abroad with the feeling that persons with disabilities are indeed deeply threatened and afflicted by the rhetoric of the proponents of prenatal diagnosis. Nevertheless, this is not all that the statement says:

The common thread throughout the discussions was that we as short statured individuals are productive members of society who must inform the globe that, though we face challenges, most of them are environmental (equally with people with other disabilities), and nosotros value the opportunity to contribute a unique perspective to the diversity of our social club. 30

If in that location is any question in your mind that this is an important and highly emotional effect, the cover from the New York Times Mag of February 16, 2003 with the headline, "Should I Have Been Killed at Nativity? The case for my life,"31 should convince y'all otherwise. Although the article itself is concerned with a contend between Princeton philosopher Peter Singer and the author, Harriet McBryde Johnson, whose picture in a wheelchair is shown on the cover, over the euthanasia of newborns with disabilities, it might just equally well take been about prenatal diagnosis and abortion.

I accept thought a lot nigh the arguments that are encompassed past the disability rights critique (for summary, see Appleyard 21). This thinking has been particularly focused by my involvement with the National Downward Syndrome Club, which brought me into extensive contact with many persons with Down syndrome and with their parents and friends—non in the formal role of physician and teacher and research scientist, but as their abet and friend. In the latter capacity, I was forced to await at the earth from their point of view and to ponder why it was and then uncomfortable for me to speak well-nigh prenatal diagnosis in their presence. I shall not go into the arguments on both sides of the inability rights critique. Notwithstanding, I do accept to say that while I exercise non accept the arguments of the disability rights critique as they apply to prenatal diagnosis, I am nevertheless greatly troubled past what the critique says almost how homo and medical geneticists are perceived and about what they—near what we—are doing. Lynn Gillam said it very well:

For people with disabilities, to take someone else look at their lives from the exterior, and make judgments about how fulfilling and how happy they are, must exist deeply offensive… Even so,… the fact that a practice is offensive to some section of the community does not make information technology morally wrong to engage in it, or make it to exist discriminatory to the minority… This does non mean that criminal offence or psychological distress caused to people with disabilities does not thing. It certainly does, and there is good moral reason to attempt to avoid or at to the lowest degree to minimize such effects. 32

I come now to the final question regarding prenatal diagnosis and eugenics—does prenatal diagnosis involve deprivation of life? The reply, in real terms, is certainly yes. Whatever the theory might exist with regard to prenatal diagnosis every bit merely providing information, prenatal diagnosis and abortion are inextricably linked. Without inbound into the arguments pro and con, I have made my peace with the right of parents to terminate pregnancies that are unwanted. Yet, I must confess that I agree with Bryan Appleyard that "whatever one's feelings virtually abortion, everybody must agree that this does non amount to a very positive accomplishment for this new form of medicine."21 (p129)

So, is prenatal diagnosis eugenics?

  • Does information technology seek to ensure the birth of well-born children? Yep, it certainly does!

  • Does it seek to improve the genetic qualities of populations? NO, it does not!

  • Does it adhere to the basic assumptions underlying the eugenics of the past—to unproven genetic mechanisms or to genetic determinism? Over again, the answer is NO.

Does prenatal diagnosis exhibit the attributes that made the practice of eugenics intrinsically incorrect?

  • Is at that place coercion and absconding of reproductive freedom? I would say NO, just as I mentioned earlier, there may well be coercive elements at play.

  • Is there state control? Again, the answer is NO, but the state—in the literal sense, the states—do seem to accept a vested involvement in the outcome.

  • Is there discrimination and racism? Again, NO. These practice non announced to be major issues except maybe from the point of view of lack of access to services rather than over utilization.

  • Is there denigration of the disabled? I would say NO, but there are many who feel very strongly that it does.

  • Finally, is prenatal diagnosis murder? Prenatal diagnosis may certainly pb to ballgame and deprivation of fetal life, but NO, I do not equate this with either euthanasia or murder.

And then, by the strictest definition—"eugenic" being equated with "well-born"—prenatal diagnosis is eugenics. But, it is non concerned with populations, information technology does not attach to the basic assumptions underlying eugenics of the past, and, every bit currently practiced, it does not truly exhibit attributes that made the practice of eugenics intrinsically wrong. Therefore, from my point of view, prenatal diagnosis is, at worst, eugenics in name only. BUT!!!… Only, I would hope that we all agree that there is still much for us to remember virtually with regard to what we are now doing, and fifty-fifty more to recollect about with regard to what nosotros might be doing in the future—well-nigh carrier screening before marriage, presymptomatic genetic testing, preimplantation diagnosis, cistron therapy, and the search for genetic components of behavior and intelligence.

My view of how the genetics customs should address the public concerns virtually a resurgence of eugenics is philosophically quite close to the view expressed by Harper and Clarke in the introduction to their very insightful and valuable book, Genetics and Society and Clinical Do, which appeared in 1997, and I shall close past quoting their comments on the subject:

…a questioning and critical mental attitude, both to new developments and to established concepts, is of import and necessary in a field like medical genetics, which inevitably impinges on so many controversial areas… There is all the more reason to maintain a critical attitude in the light of the disastrous abuses that accept already been carried out in the proper name of genetics by professionals and by an entire social organization in the past…

We demand to keep live our awareness of these past abuses and to maintain our vigilance that new developments are not misused in the time to come… We feel that it is much healthier for this questioning to come from within the genetics customs, rather than for those in the field to 'close ranks' against external criticism. 20 (p3)

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Acknowledgements

The research for this presentation was performed in role in 2000 while Dr Epstein was a Scholar in Residence at the Rockefeller Foundation Bellagio Study & Conference Center, Bellagio, Italia.

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The ACMG presidential address was presented March 13, 2003 at the 2003 Almanac Clinical Genetics Coming together of the American College of Medical Genetics, San Diego, California.

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Epstein, C. Is modern genetics the new eugenics?. Genet Med five, 469–475 (2003). https://doi.org/10.1097/01.GIM.0000093978.77435.17

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