Volume 3, Issue 04 - June 2000

Ethical Seams in Designing Human Genes

There is little doubt that only the mention of genetic engineering sharpens the apprehension of most - and it rightfully should. After all, as the prospects of manipulating the human genome become actualized, not many things are likely to have as intimate an effect on our lives as the engineering of our own DNA - our "immortal coils."

But, is the degree of apprehension and fear that we see in society justified? I believe that much of the fear comes from inaccurate information transmitted through the media, and more importantly a reluctance to discuss the moral issues that are inevitably linked with genetic engineering. It is not an uncommon problem in the ethics of technology that our discussion of the moral issues surrounding a new technology lags far behind the technology itself. Consequently, when the possibilities are actualized, we are left unprepared to deal with them in a morally responsible manner. Let me take this opportunity then, not to come to any conclusions regarding the moral permissibility of genetic engineering, but rather to make more explicit the ethical issues surrounding genetic engineering.

Some Distinctions

To begin with, one needs to be clear about the different kinds of genetic engineering. The first distinction involves the type of genes that we are targeting. Somatic cells are those cells containing a full copy of an individual's DNA and comprise the bulk of our cells. The genes found within these cells are not transmitted to offspring. Germ line cells, on the other hand, are those cells stored within the reproductive organs and include spermatozoa and ova. The genes found within these cells will be transmitted to any offspring the individual produces. Human gene manipulation involves either the introduction of genetic material into humans or the modification of existing DNA in humans.

Somatic cell gene manipulation therefore introduces genetic material into, or modifies the existing genes of, the somatic or non-reproductive cells of the individual. Manipulations of this kind are limited to the individual undergoing the procedure. Any changes made to the genes are not inheritable. By contrast, germ line genetic manipulation is the manipulation of the germ line or reproductive cells of the individual, thus targeting unborn persons. Changes to the genetic composition will be transmittable from one generation to future generations.¹ 

In addition, genetic manipulations may be distinguished by the intention of the manipulation. Manipulations performed on the somatic or germ line cells of the individual with the purpose of correcting a genetic disorder are termed gene therapies or alterations². These procedures are referred to as "Negative Genetic Engineering." Manipulations performed on somatic or germ line cells with the purpose of enhancing or improving certain normal characteristics are termed gene enhancements and are collectively referred to as " Positive Genetic Engineering."

Somatic Cell Gene Therapy (SCGT)

SCGT is strikingly analogous to other medical procedures in that the effects are limited to the individual undergoing the therapy, and the intention of the intervention is consistent with at least one of the goals of medicine - the amelioration of disease. Consequently, it may seem that SCGT presents no moral issues other than those posed by current medical technologies. So what we want to consider from a moral perspective in employing this technique is: risk-benefit analysis (including an analysis of the potential safety and effectiveness of the therapy and the presence of alternative therapies), selection of candidates, informed consent, confidentiality, review boards and allocation of scarce resources. SCGT has received a wide acceptance among the scientific community and associated ethics organizations. It is currently successfully used for such procedures as artery replacement.

Germ Line Genetic Alteration (GLGA)

By contrast, many have been reluctant to give GLGA the moral stamp of approval because of its distinct intergenerational consequences. The constant and stern objections raised have included warnings of great perils and disaster ranging from the wrath of the Almighty as we attempt to change human nature and engineer individuals, to more secularized warnings of tampering with evolution and natural selection. But what exactly are the moral issues here?

The main issue seems to be the fact that since the targets of manipulation are future unborn persons, there is no one to give consent to the procedure now. If a parent undergoes GLGA, is she fulfilling an obligation to her child or ensuring a right of her future child to a certain degree of health? Or is she in fact infringing future persons' rights to bodily self-determination and autonomy? Intuitively, some might find it attractive to say that our intentions in this case are noble and compassionate and that we are acting in the best interest of future persons where at least part of their best interest is freedom from certain debilitating genetic diseases.

Consider the following example: Sally's five-year old daughter Amy is experiencing complete kidney failure. A kidney is available for transplantation but Amy is frightened and vehemently opposed to having surgery. Sally has two options. Since most would consider Amy not competent to make life or death decisions, Sally may either override her requests to forego surgery or respect her wishes and not give proxy-consent for the surgery. What ought Sally to do and why? Clearly, there are benefits to the transplant. If successful, the little girl will hopefully lead a rich and fulfilling life, one not otherwise available to her. We may want to say that, all other things equal3, Sally is in fact acting in her daughter's best interest by forcing her to have the transplant. If we would consider it the right thing to do in Sally's case, then it seems to follow that trying to evade the disease before the child is born is equally morally permissible.

However, some are not convinced. Critics have argued that there is just something fundamentally different when the manipulation of our DNA is involved. We may actually be taking on the work of God or Mother Nature, a job we are completely unqualified to do. Regardless of our intentions, we have not the wisdom or understanding to undertake this task. These tensions must be addressed in any thorough examination of this issue.

Somatic Cell Gene Enhancement (SCGE)

SCGE is a form of cosmetic surgery on par with breast augmentations, rhinoplasty and hair transplants. Like SCGT, the effects of SCGE are limited to the individual undergoing the procedure. Like cosmetic surgery, SCGE strives to enhance those features in the recipient that are commonly accepted as normal. So, the question is, if we allow cosmetic surgery, why not allow SCGE? Again one might try to argue from the uniqueness of our DNA to the impermissibility of SCGE, but that argument can only have weight if the choice will affect persons other than the recipient. Therefore, SCGE is immune, at least to this objection.

Some argue that the real problem with SCGE is that it inevitably leads to increased discrimination and inequality in society. SCGE is not a form of medical treatment, so the objection goes, and since the medical profession is first and foremost concerned with the amelioration of disease and suffering and the promotion of good health, SCGE cannot be justified. This was in fact the argument put forth by the Royal Commission on New Reproductive Technologies in their 1993 report on genetic engineering^{. 4}

But this is not enough to ban SCGE. Again, both procedures act ultimately to bring about a change in a certain phenotype. If we ban SCGE we cannot, without inconsistency, allow cosmetic surgery. It may well be that both tend to increase discrimination and inequality, and that consequently we ought to prohibit both procedures. However, in doing so, we might be running the risk of violating some higher order principles like an individual's right to autonomy and bodily self-determination. To infringe on these rights would set a very dangerous precedent and it is not clear that it is the best solution.

Germ Line Genetic Enhancements (GLGE)

GLGE is the most contentious type of genetic engineering. Not only are we seeking to improve normal phenotypes here, but more specifically, we are seeking to improve the normal phenotypes of unborn persons. As such, each of the objections that applied to GLGA regarding the moral status of future generations and the perils of interfering with God's work or evolution may also be used against GLGE. In addition, one might also hold the same fears about discrimination and inequalities as SCGE. Is the prohibition of GLGE morally justified then?

Consider the parent who notices a talent for playing hockey in her child and sends the child to hockey lessons. We call this "hot-housing" or encouraging a child to be their best. Certainly we do not frown upon these efforts, even though they are bound to create inequalities between children. What then is it that is so objectionable about providing our future children with these talents proactively?

One concern may be that there is a moral difference between internal and external encouragement. Another parallels the concerns regarding SCGE in that perhaps there is something morally objectionable about both GLGE and "hot-housing". Yet another factor may be the elimination of choice on the part of the child - there is undoubtedly an element of autonomy lost for the child if they are "genetically programmed" to be an excellent hockey player. Things get even murkier when part of the programming includes influencing the very desire to be an excellent hockey player!

Conclusion

Implicit to genetic engineering of all types is the possibility of abuse. But it is important to recognize that to ban genetic engineering because it has the potential for abuse is tantamount to saying we ought to ban sexual intercourse because it has the potential for rape. So, the task will be to find those objections which represent some intrinsic property to each type of genetic engineering that make it morally impermissible in principle.

One final note on the issue of feelings. Many have a "feeling" or "intuition" that genetic engineering is either clearly wrong or perfectly permissible. We must take care not to confuse our moral feelings with feelings about a moral issue. As John Harris warns, "Feelings per se... may well lie at the root of morality itself and it is not impossible that brute feelings lie at the root of any moral principle. But such feelings also lie at the root of many immoral principles and bare prejudices."⁵  So while genetic engineering is indeed a moral issue and we are all bound to have feelings about it, we must be wary of constructing any moral prescriptions based on those feelings until we are sure that our feelings are appropriate ones.

References

1 GLGE may also be the effect of somatic gene manipulations performed on embryonic or early fetal gene therapy if the cells are not yet differentiated.

2 There is strong resistance to use of the term "therapy" in this context because the term usually refers to the treatment of an actual, existing person. Germ line manipulations instead involve gametes or embryos, neither of which are straightforwardly actual existing persons. Therefore, the preferred terminology concerning germ line manipulation with the intention of correcting genetic disorders has been "germ line genetic alteration."

3 I assume that no cultural or religious diversities exist here such that the implications of the analysis may be much more complicated. (I have in mind cases like that presented by Baby K'aila.)

4 Royal Commission on New Reproductive Technologies, (1993), "Gene Therapy and Genetic Alteration," Proceed With Care: final report of the Royal Commission on New Reproductive Technologies. p. 931

5 Harris, J., (1998), Clones, Genes, and Immortality: Ethics and the Genetic Revolution, Oxford, NY: Oxford University Press. p. 157.

Announcements

• PHEN would like to notify members of an upcoming initiative: a distance learning course in introductory bioethics. The course will be geared towards members of health ethics committees in the province, and is anticipated to cover twelve topics over a period of 3 to 4 months. The scheduled start date is February of 2001. Stay tuned for more information!
• The Royal Alexandra Hospital in Edmonton, Alberta is opening one position for a full-time, one-year Clinical Ethics Residency to begin in September, 2000. The position will be based in the Royal Alexandra Hospital (RAH), with an adjunct position to the John Dossetor Health Ethics Centre (JDHEC) at the University of Alberta. This residency is aimed at individuals with extensive theoretical background in health ethics who wish to expand their clinical experience and prepare for the professional role of a Clinical Ethicist. For further information, please contact either Dr. Neil Elford at NElford@cha.ab.ca or Prof. Laura Shanner at laura.shanner@ualberta.ca.
• In response to the Long Term Care Review (Broda Report) and public feedback regarding it, Alberta Health and Wellness recently released Strategic Directions and Future Actions: Healthy Aging and Continuing Care in Alberta. The first of nine strategic directions, titled Healthy Aging, makes the commitment that "Alberta Health and Wellness will work with the Provincial Health Ethics Network and others to promote public awareness and discussion and explore ethical issues specific to seniors' health". The full text of the document is available at www.health.gov.ab.ca/key/longterm/stratreport.pdf.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.