Eubios Ethics Institute | Book List | TOP - Asian Bioethics in the 21st Century

6.3. Reflections on the Human Dignity in Genetics

- Mi Jung KOO1 and Jae Sub YANG 1,2
Philhuman Institute of Bioethics1 and
Division of Life Science,2 Daegu University, Korea
Email: jsyang@daegu.ac.kr

Arnold Toynbee, the well-known historian, has spoken of 'technology's relentless progress', and we see technology by this date has progressed even up to wield its power to over Nature within us, nothing to say Nature outside us. As we are entering an age in which the genetic revolution is upon us so that 'a brave new world' is opened, it seems that, to borrow Christian expression, the efficacy of flaming sword with which God enclosed Garden of Eden to guard the way to the tree of life (Gen. 3.24) has faded away by 'the unshackled Prometheus', that is, representatives of the ultramodern scientific technology.

The next 100 years will see changes more dramatic than the 20th century, which saw the creation of molecular genetics, the rise and fall of eugenics, and the creation of a U.S. and international human genome mapping effort (Glenn McGee, 1997). Now it is time to use our sound imagination to think about what might come to be in the world of 'the second Genesis'. There are two kinds of imaginary picture about the future controlled and designed by geneticists: one is that genetics would improve the quality of life and promise the very humane future, and the other that genetics would destroy the human dignity and lead irreversible disaster. Without serious consideration of human dignity in the context of genetic engineering, we would be overwhelmed by unpredictable results of new innovations that are coming soon.

The importance of the concept of human dignity in genetics

Geneticists are continuingly unveiling the secrets of our genes. It is at no distant date that we can shop particular genes at the genetic supermarket. As Michel Foucault said, the time when the 'bio-power', the outcomes of combining the genetic knowledge with social power, controls over our lives is at hand.

J. Craig Venter, who had led the Human Genome Project (HGP), contributed to a draft product of the HGP last year, and recently retired from the bio-venture corporation Celera Genomics, stated that by the end of this year he can offer the diskette containing of personal genome information within one week after received order to those who pay 712,000 dollars for this. Also he assured that mankind would have the more controlling power over his/her own life through this service as well as the economic benefits by investing small money at the birth to check the 'potential' risks in advance, not to spend much time and money later to cure the 'actual' diseases. Sounds fantastic!

Warning us to be more humane in the coming 'risk-society', especially with regard to genetic examination Hans Jonas stresses our right not to know, that is, we have a right to reject more information of our own and of our offspring than we need so not to be subjected to genetic fatalism (Eun-Jung Park, 2000, 151 recited.). His opinion is that it is not necessary to know the genetic information to live in happiness. In this sense, a Universal Declaration on the Human Genome and Human Rights made on 25th of July in 1997 proposed that "the right of each individual to decide whether to be informed or not on the results of genetic examination and the resulting consequences should be respected"[Article 5-c].

Although today's genetic achievements give us great hope and promise, we have to be cautious of remembering that still many feel great fears of dehumanization caused by new 'genicism (gene-classicism)' in the future, and it looms ahead. A major element in the human genetic engineering debate is the concept of human dignity. And, in order to safeguard human dignity, we may acquire the wisdom to minimize the risks not to maximize the benefits.

Besides, we understand that human dignity refers to the value of human life and its inherent preciousness. However, the concept of human dignity or the sanctity of life is simple in statement but complex in its explanation. People tend to have equivalent feelings: that human life has sanctity, but that many other things, such as love, justice, liberty of conscience and loyalty to a belief, etc., have been valued above human life; that human life must not be destroyed, but that it need not be always preserved, for example, in the abortion or euthanasia context.

As like, some say that the genetic intervention in human life is consistent with human dignity, but others maintain to prevent human life from becoming an object of genetic engineering in order to protect human dignity. Both of them are on the basis of human dignity, and each also does its best to promote the sanctity of life. So we discover that it is not easy to draw a clear line of separation between our two feelings.

Then, what is human dignity? Why is this concept so important in genetics? In answer to the latter question, the reason is that while general scientific technologies only change the environmental conditions surrounding human lives, biotechnology changes the very human lives itself so that their impacts on the natural and social conditions would be tremendous. Biotechnology implies the questions of meaning and identity of human beings. And the very tiny genetic variations will shake our basis of human beings. That is why bioethics is urgently needed in the areas of genetics/genetic engineering, especially in gene research, gene testing, gene counseling, gene selection and gene therapy, so on.

Most of those in biology, genetics and medicine assert that their research and its application would serve mankind to be free from any dreadful diseases due to genetic deficiency. There may be no doubt with their intention. However, it passed away to be justified in making an excuse for unintended consequences. Now we live in the 'responsible society'. We have to be responsible for what we have done.

In this sense, A Universal Declaration on the Human Genome and Human Rights insists that "the responsibilities inherent to the activities of researchers, including meticulousness, caution, intellectual honesty and integrity in carrying out their research as well as in the presentation and utilization of their findings, should be the subject of particular attention in the framework of research on the human genome, because of the ethical and social implications"[Article 13, our emphasis]. Furthermore, this document also adds that "no research or its applications concerning the human genome, in particular in the fields of biology, genetics and medicine, should prevail over the respect for human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people"[Article 10]. Here we see still human dignity is main issue in every aspect of scientific activities.

Our Korean constitutional law confirms that, "everyone has value and dignity as human beings, and a right to pursue happiness"[Article 9]. Human dignity is the basis of human rights, so called the natural or absolute rights of human beings. As like, the Universal Declaration proclaims, "everyone has a right to respect for their dignity and for their human rights regardless of their genetic characteristics. That dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity"[Article 2].

Yes, it is a universal truth that everyone has a right to be respected and treated with dignity. However, the problem is that such universal validity is just abstract so that it is suddenly proved to be uncertain and ambiguous if we ask what it means in the concrete context.

Who is a person?

For many, human dignity is present in all members of the human species from the moment of their first existence (Thomas Shannon, 1997, 47). All members of the human species begin with the potential to express and experience personal life. The critical issue of this common belief is 'the capacity' for such development, not the actual development itself. For example, although a child, not an actual adult person yet, has 'the potential to become' an adult, we treat him/her with respect. Here we need to consider that the potentiality of a person does not mean just physical potentiality, but the potential to develop in some ways or to bring into some results. So we need to discern 'the potential to become' from 'the potential to produce'. Because while the former is the development potential so that requires some individual identity, the latter does not necessarily require the individual identity between an entity having the potential to produce and an entity actualizing the potential (Buckle, 1990, 93-96). We just believe that it is desirable to respect a person who has the potential to become, regardless of the potential to produce. Thus, even though such potential may not be actualized-because of genetic disease or some intrauterine trauma-, such an individual is still valued because of his/her possession of life and the essential capacities of personhood.

Here we come to face another complicated problem regarding the time when a human life begins. Daniel Callahan identified three basic orientations to personhood: the genetic school, the developmental school, and the school of social consequences (Callahan, 1970, 378ff.)

The genetic school defines a human person as any being that has a human genetic code. So according to this point of view, personhood comes with the setting of the individual's genome at fertilization. Those who use the concept of 'the potential to become' would argue that the individual identity continues from the time of fertilization. From the fertilized egg to an adult, there is genetic continuity. Therefore, this orientation emphasizes that an entity should be respected as having moral status from the stage of fertilization. A problem with this perspective is that it identifies the person with the genetic code and is open the charge of genetic determinism. It is true that the person is greatly affected by his/her genes, not totally determined by them. It is my opinion that each person is made up by joint interaction between his/her genetic code and the environmental conditions including socio-political and economic-cultural state.

On the other hand, some argue that the point of the establishment of individuality is not at fertilization but at the time the process of segmentation occurs (Dawson, 1990, 230). In the case of an identical twin, the completion of fertilization establishes genetic uniqueness, but such uniqueness does not establish individuality. According to the biological report, the twinning process can occur anytime up until 14 days after fertilization. In this respect, the fertilized egg is not the same entity as the embryo after 14 days. This orientation belongs to the developmental school, holding that while the establishment of the genome serves the basis for further development, some degree of development and interaction with the environment is necessary for a being to be considered as a full human person.

The other reason why the starting point of the potential person can not be the time of fertilization but the time of implantation is on the basis of the pregnant woman. The time she may know she is pregnant is not at fertilization but at least 3 weeks later after fertilization. The mother's assurance of this new entity is also important to admit it as a valuable being. We can call this argument as 'the relational approach'.

Richard McCormick of the Kennedy Institute of Ethics at Georgetown University says "the meaning, substance, and consummation of life is found in human relationships", so that when we try to make quality of life judgments, as in cases of diseased or defective newborns, "life is a value to be preserved only insofar as it contains some potentiality for human relationships"(McCormick, 1974, 172-76). Joseph Fletcher points out that there is a danger in this argument that on this basis anencephaly's certainly, and idiots probably, lack personal status for their lack of the relational potential (Fletcher, 1987). That is why we have not to take only one criteria but to take several insightful criteria of human dignity altogether.

Some scientists who persist in almost unlimited fostering biotechnology think that the embryos before 14 days are not human beings but just a lump of cells so that states should allow free experiments on the early embryos in the stage of preimplantation.

Here is the dilemma. Although it is scientific-logically reasonable to accept the implantation theory as the starting point of human beings, there are at least two problems: one thing is that it is against the ordinary belief that human beings start at fertilization, therefore the experiments on human embryos should not be allowed in any cases to protect human dignity; the other thing is that the implantation theory has some limitations in itself in the case of the anencephaly. To assume that the implantation theory is a criterion for the basis of human dignity means that the human life after implantation should unconditionally be protected by all means. Therefore, even though the embryo is suspected as an anencephaly and have 0 % of survival probability after a delivery, the parents should not take abortion. How harsh it is! In another pitiful case of the lack of autosome, this entity is to be aborted naturally. Then, is it ordinary reasonable to regard the time of implantation as the starting point of human beings so that we have to preserve their lives once implanted? Which is the best way to safeguard human dignity in these cases whether to delete or to preserve them?

In that regard, it seems that the orientation of the developmental school, whether it focuses on the establishment of individuality or neurological development, has difficulty in protecting human dignity. But another difficulty is that if we prohibit any attempt to carry out research or experiment on the embryo/fetus on the basis of human dignity, it may raise scientific lag. Some scientists insist that the freedom of research is necessary to the progress of knowledge, and should be regarded as much important as the requirement of human dignity. It is hardly to deny the efficiency of fetal tissue research. And there may be validity to improve the health of individuals and humankind as a whole.

But as the Article 10 of a Universal Declaration states clearly, no research in the fields of genetics and related areas should prevail over the respect for human dignity. So, it would be helpful that the question of the starting point of human beings remains open, and we make every effort to foster scientific and religious and cultural cooperation by further dialogue until everyone feels satisfied with the consensus.

Finally, with relation to the third orientation to personhood, it would rather fail to support the concept of human dignity. This standpoint departs from the biological and developmental elements and focuses on what society sees as valuable for personal being. This school first determines what kind of persons are wanted by society and then sets the definition in accordance with that. For example, Joseph Fletcher proposed 15 positive indicators and 5 negative indicators as a human criteria being as following (Fletcher, 276):

Positive Human Criteria Negative Human Criteria
1. Minimal intelligence
2. Self-awareness
3. Self-control
4. A sense of time
5. A sense of futurity
6. A sense of the past
7. The capability to relate to others
8. Concern for others
9. Communication10. Control of existence
11. Curiosity12. Change and changeability
13. Balance of rationality and feeling
14. Idiosyncrasy15. Neo-cortical function
1. Man is not non- or anti- artificial
2. Man is not essentially parental
3. Man is not essentially sexual
4. Man is not a bundle of rights
5. Man is not a worshiper

A problem with this perspective is that history, both ancient and contemporary, reveals severe negative consequences for those who do not meet or fit criteria of social acceptability (Shannon, 1997, 48). Frankly speaking, we feel some 'invisible indicators' as to be welcomed by our society forcing us to survive through a bloody competition with one another. Therefore, we can easily imagine that if the society structured according to the genetic hierarchical order has come, the indicators would be increased and become more narrow so that a few could be meet criteria of social preference.

In this respect, still the principle of justice, one of bioethical principles, is needed. Without the effort to make a just society first in our age, it is no doubt to face the risks of social discrimination and stigmatization. That effort is a important part of putting the mandate stated in a Universal Declaration into practice: "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedom and human dignity"[Article 6].

The issues of human dignity in Gene Therapy

It is easy to imagine a world at no distant future in which parents have much more control over the inheritance of children. Gene therapy and prenatal diagnosis will be thoroughly assimilated into obstetrics technologies.

Gene therapy is a novel approach whose purpose is to change the expression of some genes in an attempt to treat, cure, or ultimately prevent disease (James Wilson, 1999). Gene therapy can be targeted to somatic (body) or germ (egg and sperm) cells. In somatic gene therapy the recipient's genome is changed, but the change is not passed along to the next generation. In germ-line gene therapy, the parents' egg and sperm cells are changed with the goal of passing on the changes to their offspring. Germ-line gene therapy is not being actively investigated, at least in larger animals and humans, although a lot of discussion is being conducted about its value and desirability.

Nelson A. Wivel and LeRoy Walters have identified four types of somatic cell gene therapy: the first and second types of genetic intervention in human beings involve correction or attempted correction of genetic defects in any of the cells of the body, with the exception of the germ or reproductive cells, and the correction or prevention of genetic deficiencies through the transfer of properly functioning genes into reproductive cells; the therapeutic strategy is to repair the cause of the disease-the mutant gene-so that the disease will not recur; the third and fourth types of genetic interventions involve the use of somatic cell or germ-line gene modifications, respectively, to affect selected physical and mental characteristics, with the aim of influencing such features as physical appearance or physical abilities; the genetic modifications are directed toward healthy people who present no evidence of genetic disease, and type 4 genetic intervention, if successful, could assure that the enhancement would be passed on to succeeding generations (Shannon, 1997, 146-47 recited).

In general, we can also divide genetic interventions according to their purposes: one purpose is therapy, which is initiated to cure the disease or to restore the patient to the best state of health that is possible; the other is enhancement, which is attempting to go beyond current standards and understanding of health and well-being (Shannon, 1997, 141-42).

It seems that there is no objection to therapeutic interventions in the case of somatic cell gene treatment. Furthermore, even though somatic gene therapy performed on those who have genetic disorders like Huntington's disease may affluence to all future generations descending from this individual, it is difficult to find the reason not to allow therapeutic interventions. If so, it would be cruel to the person concerned. Such an intervention can be an expression of human dignity.

To be sure, almost all who have commented on somatic gene therapy-scientists or ethicists-see no difference between this therapy and any other type of therapy. But still several questions may be raised: (1) Even if the goal of genetic intervention is not for enhancement but for therapy, meaning elimination of the defective genes, what are defects? Is that aberration of normality? Who decides what is normal? (2) Why somatic gene therapy is more or less ethical than germ-line gene therapy? Is it not generous to manipulate genes to offer the highly enhanced genetic characteristics to the offspring? (3) If all technological hurdles in genetic interventions are overcome, then will everyone be the beneficiary from the achievements? If the costs associated with this therapy are exorbitantly expensive, who will pay for their use? (4) Do our future generations have the right to inherent an unmanipulated genome? Does the concept of informed consent have any validity for the potential patients who do not yet exist? (5) Will genetic interventions serve as the new eugenics? Do we have enough prudence not to repeat mistakes made in the past of the eugenics movement? (6) As our knowledge and power of genetic intervention is getting increased, at what point do we cross the line into 'playing God'?

Remaining so many questions unsolved, research will continue. It is true that bioethics is growing quickly but it is unlikely to catch up with science. Only what we say is that how the gene modification or manipulation debate is resolved will reveal our ability to participate in the long history of human evolution with responsibility. So, the more human genetics is developed, the more we need to be humble to promote human dignity.

In addition, one thing we need to consider seriously is whether we have a right to alter our genetic structure. As a Universal Declaration proclaims, "the human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity"[Article 1]. That means the contemporaries have no right to deal with human genome arbitrarily. Rather, it is a call for very careful intervention in any cases, if acceptable, that should be based on a concern for future outcomes.

Conclusion

To be sure, biotechnology is the great new realm of technological change, and medicine is its chief beneficiary. After the First World War our cultural emphasis lay on the social and behavioral sciences. Then it shifted at the time of the Second World War to the physical sciences, due in the main to new frontiers in nuclear research. But by the sixties the greatest excitement was being found in the biological sciences (Fletcher, 1987, 222). The unrealized dream of ancient alchemy is come to true due to biotechnology, so-called 'algeny'. As they say, we live in which yesterday's 'science fiction' is today's science.

Some pessimists speak cynically that only God can stop the rude attempt to access our genome, to unveil genetic code and, eventually, to alter human genetic structure. But unfortunately, history shows that what human beings can do in the fields of scientific technology including an atomic bomb is never interrupted even in the name of God. We know that. Then, regardless of God's real existence, we have to find the common ground to prevent human beings from infringing on their dignity for the purpose of turning genetics into eugenics.

For this, we may need to train ourselves to act "value-rationally" not "goal-rationally" as Max Weber suggested (Callahan, 1987, 243 recited). Goal-rational conduct involves reasoning about means to ends. It is a form of 'instrumental rationality", involving the choice of effective and efficient means to given ends. It has been dominant in technology. And it is not difficult to think what will take place tomorrow if we continue to act in accordance with goal-rationality. While, value-rational conduct involves a conscious belief in the absolute value of some ethical, aesthetic, religious, or other form of behavior, entirely for its own sake and independently of any prospects of external success. Now we have to choose policies toward technologies or new technologies themselves not because they achieve certain goals, but because they express certain values, especially in respect of human dignity.

Obviously, human beings had evolved and are on the way to evolve. But this process is very slow and responsive to a wide variety of the environment surrounding human beings. After all, prudence and wisdom must be joined with biotechnological discoveries and their applications to preserve the value of human dignity. For this, the practice of solidarity should be encouraged so that scientists have time to ponder on the meaning of human dignity in the process of every single scientific activity.

References

Buckle, S., "Arguing from Potential", Peter Singer et al. (eds.), Embryo Experimentation, Cambridge: Cambridge University Press, 1990.
Callahan, Daniel Callahan, "Science: Limits and Prohibitions", Stephen E. Lammers and Allen Berhey (eds.), On Moral Medicine, Michigan: William B. Eerdmans Publishing Company, 1987.
Callahan, Daniel, Abortion: Law, Choice and Morality, New York: Macmillan, 1970.
Dawson, D., "Segmentation and Moral Status: A Scientific Perspective", Peter Singer and others (eds.), Embryo Experimentation, Cambridge: Cambridge University Press, 1990.
Fletcher, Joseph, "Respect for Persons and Their Agency", Stephen E. Lammers and Allen Berhey (eds.), On Moral Medicine: Theological Perspectives in Medical Ethics, Michigan: William B. Eerdmans Publishing Company, 1987.
Fletcher, Joseph, "Technological Devices in Medical Care", Stephen E. Lammers and Allen Berhey (eds.), On Moral Medicine, Michigan: William B. Eerdmans Publishing Company, 1987.
McCormick, Richard A., "To Save or Let Die: The Dilemma of Modern Medicine", Journal of the American Medical Association 229, July 8, 1974.
McGee, Glenn, "Ethical Issues in Genetics in the Next 100 Years", xxx pp. In Lecture of the UNESCO Asian Bioethics Congress, Kobe & Fukui Japan of November 6, 1997.
Park, Eun-Jung, Laws and Ethics in the Age of Biotechnology, Seoul: Ewha Womans University Press, 2000.
Shannon, Thomas A. and Allan B. Wolter, "Reflections on the Moral Status of the Pre-embryo", Theological Studies 51, 1990.
Shannon, Thomas A., An Introduction to Bioethics, 3rd ed., New York/Mahwah, N.J.:Paulist Press, 1997.
Wilson, James M., "Human Gene Therapy: Present and Future", Human Genome News, Vol. 10, No.1-2, February, 1999.
Wivel, Nelson A. and LeRoy Walters, "Germ-Line Gene Modification and Disease Prevention: Some Medical and Ethical Perspectives", Science 262.

Website
http://www.ornl.gov/hgmis/publicat/hgn/v10n1/15wilson.html
http://user.chollian.net/?dna93/genomede.html

Newspaper
Donga-Ilbo, October 4, 2002.

JArticle top

Eubios Ethics Institute | Book List | TOP - Asian Bioethics in the 21st Century