Don’t Mind Us Snooping Through Your Genes

What Ethical Challenge Looms Largest As Medicine Rapidly Digitizes?


Medical technology and record keeping have gotten good. A little too good. Your health secrets are shuttering about in cyberspace, vulnerable to interception by hackers. Your DNA can tell you if you’ll get Huntington’s Disease. And a lot of us are starting to think we know as much as our doctor. The digitization of medicine brings all sorts of ethically thorny challenges. Which are the biggest? In advance of the Zócalo event “What Will Digital Medicine Look Like?,” several medical professionals offer some answers.

The biggest ethical challenge will be to bring about a balance of power

Digital medicine is turning out to be a multi-million-dollar business, and many companies have jumped into the field. Certainly, digital medicine is a welcome development, but making optimal use of technology is more important than making blind use of technology. With the evolution of concepts like Health 2.0, patients are getting involved in decisions that affect their very survival instead of blindly following orders from experts.

I believe the biggest ethical challenge before us in medicine is using technology to create a balance of power among the stakeholders–and that includes patients. (Believe it or not, patients are important too!)

It would be easy to fall into the trap of using technology to create more expensive systems centered even more on large healthcare and health IT organizations. Many ehealth solutions already leave out patients and caregivers in decision-making. Instead, technology should be used to break the stranglehold healthcare professionals have on healthcare. Digital medicine can and should be used to promote participatory medicine.

Dr. Neelesh Bhandari is author of Digital Medicine, CEO of Digital MedCom Solutions, and chief mentor at RAKSHA (Society for Knowledge and Health).


The biggest ethical challenge will be to ensure adequate privacy

In the past, medical information, even your personal information, was a closely held secret. Your health provider was in an extremely powerful position, possessing exhaustive knowledge about medicine in general and about you in particular. As an individual, you had far too little understanding about the secrets of the trade and far too little information about your own health data.

The person who has knowledge wields enormous power–and can therefore do enormous damage if that power is used inappropriately. The information age has enhanced this dynamic, with an explosion of mechanisms to access health information in ways never before conceived.

We can now access an unlimited amount of personal information about our conditions, conditions we think we have, and, potentially, the health status of others. This is an enormous opportunity to improve the health of people and communities, and the benefits clearly outweigh the risks, but the challenge is how to make sure this access to information is used in an ethical way.

People who work in healthcare today therefore have several responsibilities to society: (1) To preserve the privacy of the information they collect, exchange, and share. (2) To ensure the accuracy of that information. (3) To find ways to mitigate the effects of false negative and false positive results. (4) To imbue the consumer with the health literacy skills to understand the material that is available.

Georges C. Benjamin, M.D. is executive director of the American Public Health Association.


The biggest ethical challenge will be to enhance privacy and understanding

The digitization of medicine promises high-speed, open-access, personalized healthcare, but it comes with two particularly big challenges. They are understanding and privacy. Many of us think we know more than we do, and as medical information becomes ever more accessible, patients may feel unduly confident about their own medical decisions, and physicians may feel pressure to make use of information outside their area of expertise. This could lead to serious errors in care. As far as privacy is concerned, the increased use of social media has made us less rigid about our privacy. However, as we move towards genomic testing and the potential to learn about future disease risks, privacy takes on another dimension: the right not to know. Data access must be carefully controlled so that it is neither misused nor inadvertently provided. If you’re at high risk for Alzheimer’s disease, you don’t want to discover it through automatic ads for memory enhancers that come up whenever you’re using your favorite search engine.

Erynn Gordon, MS, CGC. is director of Genetic Counseling at the Coriell Institute for Medical Research, Camden, NJ.


The biggest ethical challenge will be to fend off hackers and snoops

The digitizing of medical records has many benefits, but the biggest ethical hazard is the potential for inappropriate access to medical information. Confidentiality is one of the oldest principles of medical ethics. Perhaps paper records can’t be encrypted the way electronic records can, but paper usually provides greater privacy protections, because it is so difficult to search through. If you were looking through the records of hundreds of people to find some term of interest, e.g., “sexually transmissible disease,” you’d have to pore through hundreds or even thousands of pages of paper. But with electronic records you can simply type in the phrase, using a keyword search.

Certainly, records require passwords, but we all know that password protection is not foolproof. Hackers often find their way into databases, and, as we have seen, human error can cause unintended failure in even the best-designed system. Public trust in digital medical information could be gravely compromised by a few high-profile failures, and such failures are inevitable. Then again, we face much the same consequences in much of the rest of our computer-based life, from credit card breaches to cyberattacks on national defense operations. But medical privacy is a sacred trust, and therein lies the difference.

Jonathan D. Moreno is author of The Body Politic: The Battle Over Science in America.


The biggest ethical challenge will be to deal with discrimination, confusion, and apprehension

As medicine becomes more electronic and “digitalized”–as people’s entire genomes are sequenced and stored in biobanks–several major ethical challenges and dilemmas arise.

First, concerns emerge about possible discrimination. Currently, life insurance, disability insurance, and long-term care insurance can all legally request copies of an individual’s complete medical records and use the information to determine whether to cover the person or not. A person may be healthy, without any symptoms, but have a genetic mutation associated with a serious condition, and thus be denied insurance.

While the Genetic Information Non-discrimination Act (or GINA) is designed to prevent health insurance discrimination, no such federal laws exist to prevent discrimination in applying for these other important kinds of insurance. Such laws are needed.

Moreover, even with GINA, subtle discrimination occurs. As I describe in my book, Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, people who had thought that they would be promoted, but who had then mentioned that they had a mutation to a co-worker, have been “passed over” for promotion. They kept their job, but were not advanced, and were sometimes marginalized. After all, no single law has eliminated racism, or gender bias. Discrimination becomes more possible when whole genomes have been sequenced, and can be communicated with the click of a button.

Ethical questions also surface about who would have access to all of the health information generated and what they can do with it. Medical centers and drug companies are collecting many people’s complete genomic information and other health data, including responses to various medications. Do these centers and companies then have a right to patent their discoveries and earn millions of dollars as a result–at the expense of patients? Myriad Genetics patented the two mutations found to be associated with breast cancer; now it charges around $4,000 for the test. The test itself costs only a small fraction of that–the rest is profit. Health insurance companies do not all cover the full costs. Millions of women also lack health insurance.

Individuals may have their full genome sequenced, but if genes are patented, the costs of each individual test could run into thousands of dollars. Many critics argue that genes–as products of nature, shared by humanity–should not be patented, while proponents claim that scientists may be patenting only the method of isolating the gene. But companies holding these patents can then charge anyone who wants to test for the gene. Critics argue that to then “own” the rights to the gene violates basic moral principles. Moreover, the U.S. government has spent billions of dollars to conduct the basic research on the genome that has allowed for the isolation and understanding of these genes in the first place.

Major concerns also arise because patients and physicians do not understand all aspects of genetics and health information. Most information that whole genome sequencing now provides is extremely ambiguous and will not provide ready answers about how we should prevent or treat disease.

Evidence suggests that most common diseases–diabetes, depression, heart problems–result from complex mixes of genetics, other biological and environmental factors, and behavior. Yet genetic markers may suggest that an individual has a 20-percent chance of developing Alzheimer’s or a 20-percent chance of having a child with autism. It is unclear what doctors or patients should do with this information.

The individuals I interviewed for Am I My Genes? were often confused by the complex genetic information they received. Some women who learned that they had a breast cancer mutation but had no symptoms decided to undergo prophylactic surgery–having their breasts and ovaries removed so that they would never develop cancer. Others were unsure what to do. These questions are difficult and troubling, and the more genetic information we receive, the more we will face countless dilemmas without ready answers. Though some scientists argue that “personalized medicine” will be developed, thus far, the vast majority of genes discovered have not led to new prevention strategies or treatment.

In many ways, we are simply collecting more data than we can interpret–we don’t know what it all means. Much of it may be helpful someday, but that may be decades from now. In the meantime, much of the information may result in discrimination, confusion, and apprehension. That’s why we must improve the general understanding of genetics, science, and health and ensure that optimal legal protections exist. That alone will take a lot of work.

Robert Klitzman is director of the Masters of Bioethics Program at Columbia University, and the author of Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, and other books.

*Photo courtesy of flickingerbrad.