Genetic Research and Ethical Issues – Part I

The privilege was all mine last week as we aired a radio program on "Genetics and a Biblical Worldview." The privilege was at least two fold in that our guest was the world renowned Genetic Epidemiologist, Lisa Canon Albright, Ph.D. At the same time, Dr. Albright happens to be my cousin by marriage. Her husband is Dr. Derrick Albright who works in the field of medical informatics and teaches at the University of Utah. Lisa is also a full professor at the School of Medicine and works in the same department as her husband. She has twenty-five years experience in the field and we refer to her affectionately as the "Gene Hunter."

 

Several issues that call for a biblical evaluation will be raised in this article including potential ethical problems related to genetic research, the abuse of science by big business, conflict of interest in the field, the glory of God in scientific endeavor, the image of God in human beings, and whether or not behavior such as substance abuse, depression, or homosexuality is genetically determined. The issue of total depravity will be raised in this context. Those issues are discussed after a brief explanation of what genes are and what Albright does as a genetic epidemiologist.

 

Genes are the "master control" instructions for cells which influence all body structures and functions. Disease and increased risk for disease can be caused by abnormal genes. This increased risk can be escalated by other factors including environment, diet, toxins, or radiation. At the same time, mutations can occur and risk of cancer increases. In fact, specific genes when mutated, called oncogenes, stimulate cell division and can cause normal cells to grow and divide uncontrollably.

 

Albright's research has to do with studying excess disease in families. Simply stated, blood samples are taken and genetic material is studied under the microscope. Certain markers are noted and correlations between those markers and disease are determined. The goal is to isolate genes that can be cited for increased risk of certain diseases that individuals might make better choices in life to prevent or delay the onset of a particular disease. Albright and her team have already isolated two breast cancer genes and are now attempting to locate a prostate cancer gene. She and her husband are working together in order to find a fibromyalgia gene. This type of work is certainly important for the health of human beings and that which has earned her the title, "Gene Hunter."

 

The benefit to people is obvious in that a knowledge of risk can cause one to make better choices in life. Regarding breast cancer, a woman who has a breast cancer gene is not guaranteed that she will get breast cancer. However, her risk is greatly increased. Her knowledge of that fact may cause her to begin self-examinations earlier and more often. At the same time, she will most likely have more thorough tests from her doctor on her regular visits than she would have had otherwise. She may opt for an MRI as opposed to a simple x-ray. Other factors may be altered in her life including certain dietary choices.

While the benefit of her research to humanity is obvious and welcome, Albright is concerned with certain ethical issues that are raised with increased genetic knowledge. For example, one's ability to get health insurance or gain employment may be compromised if certain private information is released. Insurance companies routinely charge higher rates for individuals who smoke or drink. Those issues are lifestyle choices. If insurance companies charged higher rates for the "at risk" individual based on genetic information, or denied insurance altogether, the implications and consequences would be massive. It's one thing to charge higher rates for destructive lifestyle choices, but it's quite another to charge higher rates based upon something that may or may not occur. A quasi-"Minority Report" could determine who gets insurance and who does not.

At the same time, employers could refuse to hire employees at risk for heart disease or stroke. While one would certainly want to protect the rights of business owners to hire or not hire whom they wanted or did not want as the case may be, we would certainly want to protect an individual's right to privacy as well.

With the proliferation of drug testing in the market place (a violation of human rights if done without probable cause in my estimation), one would be hard pressed to argue that genetic knowledge will not be demanded next. While HIPAA (that act relating to medical privacy) has its own set of problems, some of us still believe in the U.S. Constitution and our fourth amendment rights. "The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized." Surely the right of the people to be secure in their persons applies to genetic information. We would advocate a setting aside of said privacy rights only in accord with the fourth amendment or if non-disclosure of genetic information would bring harm to others (not the potential development of disease but only a real and present danger akin to an AIDS patient desiring to serve as a taste tester).

There is also the issue of science engaged in or used by big business. A vast difference exists between how big business does and uses science than how the simple and committed researcher does and uses science. According to Albright, most of the time, the primary issue for big business is how to develop a product that can be marketed well for the greatest profit. The bottom line for them in many cases is not helping people but their own profit motive. The abuses that drug companies have heaped upon the unsuspecting public are atrocious and ethically reprehensible. We can certainly affirm the depravity of human beings on display in the forms of greed, self-centeredness, lack of love for one's fellow human being, deception, a willingness to harm others for one's own gain, etc.

The foundational principle of the Hippocratic Oath is "First, do no harm." The same concerns Albright raised were raised by Eugene F. Diamond, a practicing pediatrician and Professor of Pediatrics at Loyola University Stritch School of Medicine, as cited in an article by Dr. Albert Mohler. "Diamond first sets the issue in moral perspective. 'Medicine as a profession is a public declaration of a willingness to devote oneself to others and to serve a higher good...The physician is a moral being who professes and affirms the moral nature of his activity.' Nevertheless, that principle is now routinely redefined or ignored, and the field of medical ethics is filled with compromises, conflicts, and worse...Diamond notes the pattern of increased complicity and the growing relationships between biomedical companies and medical research. 'Beyond the direct support of research or therapeutic trials, authors may receive consulting fees, serve on advisory boards, own equity, receive patient royalties or receive honoraria for lectures or expert testimony...because so many academicians and clinicians are involved in intertangling financial relationships with pharmaceutical companies,' Diamond concludes: 'Inevitably the outcome of the policy will be an enhanced opportunity for the introduction of conflicts of interest and a reduced confidence in the reliability of published data.'"

We were all grieved just last week to learn of four more women dying as a result of RU-486. The fact that unsound science and political expediency were involved only heightens the heartbreak involved in these tragic results. One wonders where the FDA stands in this situation as well. Pressure from special interest groups is yet another troubling issue in the ethical maze through which we must weave in this case. Prior to the most recent deaths, according to Mohler, Diamond cited an article in the New England Journal that "concluded that RU-486 (the so called 'abortion pill') was 'effective and safe'." What the article did not reveal is that all six authors of the article "were employees of Roussel-Uclef which manufactured RU-486 and stood to make huge profit from the sales." Diamond characterizes the article as "in fact an ill-disguised promotional piece" on behalf of the pro-abortion lobby, Roussel-Uclef, and their enablers in the media."

Mohler continues. "Ominous new developments in the field of human cloning and embryo research pose additional opportunities for the distortion and corruption of medical ethics. Diamond relates that congressional debate on the question of cloning revealed that at least three human cloning patents were pending in the U.S. Patent Office. Senator Sam Brownback, sponsor of the Human Cloning Prohibition Act, had argued against the destruction of one human person in order to find a cure for another. Diamond warns that the threat is even more ominous than that. "Even more frightening is the prospect of people in corporate America owning, trading, buying, and selling (cloned) people as if they were property." Nevertheless, Senator Brownback's Human Unpatent Ability was defeated in Congress."

"Could more be on the horizon? Diamond warned that the 'ultimate perversion' of medical research would be the commercialization and sale of body parts for use and experimentation. 'The reality of a brisk business in fetal body parts as an offshoot of the abortion industry has been exposed by numerous investigative pro-life agencies,' Diamond asserts. 'These are not mere allegations--actual advertisements containing price lists for human tissues from aborted babies have been discovered in scientific journals.'" The potential for horror only increases as Diamond continues. To read the full article, see Mohler's weblog on Crosswalk.com, "The Corruption of Medical Ethics: A Sober Warning," Feb. 10, 2005.

Ethical concerns as to how research is done, how it is designed, and how persons are enlisted also surface and are of paramount importance. By way of illustration, evangelicals would agree that our primary mission is to win people to Christ through the preaching of the gospel. As we affirm such, application questions can be raised. First, is it right then to invite people to church? Of course it is. Second, is it right to have a pizza blast at the church and invite lost persons, especially youth, that they might hear the gospel? While some would be quick to answer affirmatively with no qualification, the biblical answer is that we could do such as long as we informed the invitees that a gospel message would be preached. It is unethical to entice young people with pizza and then blindside them with a sermon. In such a case they are practically a captive audience. Not only is such unethical, but one runs the risk of hardening persons to the gospel as many feel betrayed in such a situation. Third, some would reason and ask that if Christ and life in His Name is the greatest need of every human being, should we not present the gospel any way we can? Do not the ends justify the means? May we have a bikini contest at church and invite our lost friends and then preach the gospel? The answer is "No." Biblically speaking, we cannot accomplish godly ends with ungodly means. We must obey the Lord in all areas and we must have a trust in God’s sovereignty and providence in such cases.

How does the above illustration apply to genetic research? The answer is simple, but profound. The geneticist cannot give over to pragmatism just as the church cannot give over to the same. Informed consent is just one of the issues to consider in this regard. In Albright's case, great care must be and is taken to ensure that persons are not violated in any way when they submit to being part of the research. This dynamic highlights another difference between the way ethical scientists who want to help people engage in their work vs. the way others who are not so ethical simply abuse God's gift.

While these issues are of great concern, genetic research should indeed move forward. Individuals should be aware of the potential for abuse, stay informed about new developments in the scientific and political world, and add their voice to the coming public debate. Rights must be protected if we are truly committed to the gospel which views the whole person as important, not simply the spiritual aspect of that person. At the same time, genetic information is powerful, as noted, in prevention and early detection of disease.

[Part Two Tomorrow]