Technology & Ethics
January/February 2008

One look at a timeline of

technological advance-ments and it is easy to see that the latter part of the 20th century and the first part of the 21st have witnessed unprecedented technological advances in the healthcare field. Telemedicine, e-prescribing, robotic surgery, artificial hearts, electronic prosthetics, and genetic screening would have been fuel for science fiction just a few decades ago. Travel a little further back in time and these and many other technological advances would be met, possible in equal measure, as “miracles” or “the devil's work.” What is interesting is that while the way we practice medicine has changed so dramatically, the attitudes toward medical technology have remained fairly constant. While some hail each new advance as man's gradual dominion over disease, death, and disfigurement, others grow increasingly concerned that we are dabbling in areas that will lead to disaster.

            Remember the outcry over the first in vitro fertilization? Hailed as a miracle technology for childless couples, others were scandalized that doctors were playing God. Now the technique is almost commonplace, but has led to other ethical questions. What do you do with the embryos you don't use? Is it okay to use them in research? If you screen embryos for genetic abnormalities or donor qualities, is it much of a leap to select sex, eye color, athletic ability? Do you destroy the ones that don't measure up? Is this better or worse than terminating a pregnancy based on a genetic screening? Though we appear to have avoided it thus far, nobody is ever quite sure which step will start us down the proverbial “slippery slope.” How far is too far?

            That question is being raised in Israel where increased ability to test for genetic abnormalities in fetuses may be leading to unnecessary termination of viable pregnancies. A routine part of prenatal care, certain devastating conditions and diseases can be screened for early in the pregnancy, both as a way to prepare parents for the challenges they might face when a disabled child is born and, in more dire cases, to give them the option of terminating the pregnancy. A recent study that appeared in the September 19 issue of JAMA showed that when prenatal screenings indicated that the infant might have Gaucher's disease, in some cases the pregnancy was terminated, even when the likelihood was that it would be a mild and treatable form of the disease. This caused the researchers some concern. The screening test, while useful in the most severe cases for which it was designed, was probably responsible for the termination of viable fetuses. They did note that those couples who received a positive Gaucher screening, but also received medical counseling, were less likely to terminate the pregnancy.

            But reproductive technology is far from being the only area of concern. Staying on the topic of genetic screening, we now have the ability to test women for the BRAC I and BRAC II gene indicating a higher risk of breast and ovarian cancer. This information can help them decide when to have children, whether or not to have a mastectomy, and whether to have their ovaries removed. What could possibly be wrong with that if it spares them getting cancer? Well, besides the obvious point that presence of the gene does not guarantee the cancer, so that information may in some cases be leading to unnecessary emotional trauma and surgery, this screening is also raising ethical questions about how to handle that information. Because the presence of the gene has a strong familial link, if one sibling has it, odds are the other might have it too. While one carrier wants this information so she can take action, the other “would rather not know” and is appalled at the thought that she may have already passed this gene to her 5-year-old daughter and now has this knowledge hanging over her head. Genetic screenings for other things like Hodgkin's disease are causing information issues in other families, leading some doctors to embark on family covenants before a screening to ensure that the information is shared only with those who want it. While this may help, it is obvious that if one of your siblings at age 35 has a radical double mastectomy, she knows something you don't. Like the prenatal screenings designed to do good, they may still do harm.

            So if we have a great technology that can save lives, should we not pursue it because it might also take away lives? Is ethics always about the greater good or is the ability to save one life worth it? These are questions meant for deeper thinkers than me, but doctors are still faced with ethical decisions daily. For instance when do you deny life-saving technology? When the patient is clinically dead or when no quality of life is possible? Who decides what quality of life is? While “First do no harm,” is a wonderful moral pillar it is a tad vague for today's scenarios. Highly publicized cases have pitted doctor's recommendations against parent's wishes and garnered the attention of the nation. If a parent still has hope, can they demand continuation of treatment when science says there is no hope? If continuing heroic measures in a hopeless situation is causing pain and loss of dignity, isn't that doing harm? What about when we have the technology to save someone and the family refuses? What if we have the ability to change or save a life, but the cost is prohibitive and not covered by insurance? Unfortunately our ability to save and prolong life has also presented us with questions we never had to answer before. Throw in cultural and religious differences and a distraught parent or two and it can be a real mess.

            Ethics has touched the vaccination issue too. Thanks to vaccinations, the world has managed to drastically reduce and eliminate most of the dread diseases that wiped out millions in years past. Yet, sometimes vaccinations are fatal or implicated in developmental diseases such as autism. Clearly for the vast majority they are a good thing, saving millions of lives, but what is the correct number for determining there is an issue? What is an acceptable number of deaths and disorders to ensure the greater good is being served? As our understanding of the workings of genes, viruses, and disease grows, our ability to prevent illness and death through vaccination keeps pace. Ethical issues rise up again however when these vaccinations start being mandated. Can I really be forced to have my 11-year-old vaccinated for a disease she is not susceptible to until she is sexually active (which according to her father won't be until she is 30)?

            What about organ transplants? Once the stuff of Frankenstein, the development of better techniques, better anti-rejection drugs, and more accurate screening, has made this a much more viable option than anyone could have hoped. However, donated organs are still extremely hard to come by and the methods for determining who gets them are constantly scrutinized and criticized. Who is more deserving of a heart transplant, the chronic alcoholic who happens to be a single dad with three small children or the 7-year-old injured in a car accident that killed the rest of his family? For organ transplants and prosthetics, ethical discussions can veer off into the truly bizarre, with some critics claiming they dehumanize the person, as if the biological heart is any more responsible for human emotion than an artificial one, or a hug from a prosthetic arm any less heartfelt.

            There are privacy and patient’s rights issues with technology as well. With the move to electronic health records, prescriptions, and telemedicine, there is suddenly an awful lot of private information floating around on computers and in cyberspace. While the technology improves access, ensures backups, increases efficiency, and probably improves patient care, some feel the information is more vulnerable electronically and may be accessed by too many people. There are also privacy issues with new tracking devices designed to monitor an Alzheimer patient's whereabouts or a heart patient's arrhythmias, and it can feel a little like “Big Brother” to some. What about neural implants to control spasms? Could they possibly be used to control other things like violent or impure thoughts or behavior?

The biggest fear in most ethical discussions about medical technology is that technology designed to heal could be abused to cause harm or to provoke decisions based on improving or enhancing humans rather than providing therapy. But is that a reason to not pursue the technology, which in all likelihood started as a therapeutic or life-saving endeavor? Most ethicists say no, the solution is to provide some level of oversight and regulation so we can keep tabs on where research is headed and how it is being used. An outright ban on certain uses of technology will probably not stop the research, but force controversial studies underground or overseas. The risks and advantages of each new technology should be considered as well as distribution of the burden, accessibility of the treatment, individual rights, etc. There will always be a possibility that technology created to do good may be used to do harm. One ethicist pointed out however, that just because we have the technology to do something, doesn't necessarily mean we will, so we should not allow visions of the “mad scientist” to have a chilling effect on research. Openness, oversight, and ongoing dialogue are each important during this technology boom.