When Topol finds fault with present-day medicine, he does so as an insider. He is a cardiologist and also director of the Scripps Translational Science Institute. As Topol sees it, the medical establishment works with a digital infrastructure that hasn’t changed much since the invention of the personal computer. The past decade has changed the way we live and work–even who we are (we’re become a species of “homo distractus,” joked Topol)–yet it hasn’t affected healthcare, which is in desperate need of repair.

Today’s supercomputers can process a tremendous amount of data at rapid speeds–IBM Watson can process 2 million pages of content in 3 seconds, for example. Some hospitals are already using Watson to deal with challenging diagnoses and complex genomic data. “Why shouldn’t every patient eventually have computers like this working for their health?” asked Topol.

The cholesterol drug Lipitor–the number-one prescription drug in the world–is an example of a treatment that’s wastefully applied. The drug is prescribed to a large population, but it only reduces the chances of a heart attack for one in 100 patients. People take Lipitor for decades without deriving any benefit. Similarly, all women are screened yearly for mammograms after age 40, even though most have no risk of developing breast cancer for the rest of their lives. Topol estimated that we spend $100 billion per year on unnecessary prescription drugs.

It doesn’t have to be this way. “We can switch population medicine to individual medicine using new tools that we didn’t have before,” said Topol. We have products that measure how much exercise we’re getting and send the data to a smartphone. We even have headbands that can detect our brainwaves as we sleep to calculate what phase of sleep we’re experiencing. (“I started using it, and the first thing I noticed,” said Topol, was that “my wife comes into the room and looks at the [brainwave reading] and says, ‘Eric, I know you’re awake, and I just want to talk!’”)

Topol used an audience member volunteer to demonstrate how sensors on his iPhone can take a cardiogram. It’s a neat stage trick, but it has turned out to be a lifesaver, too. Topol was on a plane that had just reached altitude when a fellow passenger complained of chest pressure and nausea. He performed a cardiogram on his phone and was able to make a definitive diagnosis: the person was, undoubtedly, having a heart attack, and they made an emergency landing as a result.

The smartphone possibilities don’t end there. For a couple dollars, a smartphone add-on can help you get a pair of glasses made. Or, using the phone’s camera, you can take a picture of a skin lesion and get back a report without having to see a dermatologist. “These powerful computers in your pocket have enormous capabilities–and that’s just scratching the surface,” said Topol. Wireless monitoring isn’t going to put hospitals out of business–we’ll always need to go in for surgeries and serious illnesses–but for a lot of other conditions that used to require overnight stays, patients can now be monitored much more cheaply in the comfort and safety of their own homes.

The digital revolution is also changing genetic sequencing. Right now, a whole human genome–6 billion letters–can be sequenced in 15 minutes for $1,000. And it’s only going to get faster and cheaper. People with unknown diseases have been saved by sequencing already. And cancer patients have the potential to benefit, too. “We can sequence the tumor and the mainline DNA and find out what went off track,” said Topol. “If you can find the driver mutation or pathway, then you can have a drug that precisely matches it.” Such treatment is both efficient and effective. Gene sequencing can also help with matching patients and drugs; no two humans have the same genomes (not even identical twins). “We have the tools now to be able to define each individual in a way we could never do before,” said Topol. “We can even develop new drugs and new diagnostics with the information from one sequence.”

Topol’s patients have already benefitted from his embrace of digital technology. “I haven’t used a stethoscope to listen to the heart of a patient in over two years,” he said. “It’s useless–it’s totally obsolete.” Instead, he puts a pocket ultrasound on his patient’s chest, and in a minute he can see every aspect of the heart–strength, muscle thickness, and, of course, the heartbeat. Counterintuitively, this technology also creates more intimacy between doctor and patient. Patients often don’t receive the results of a traditional ultrasound or get a report from a technician over the phone. With the pocket ultrasound, Topol can show the patient her heart and discuss his findings as they come in.

Most doctors, however, are still using stethoscopes. They are notoriously resistant to change. In fact two decades went by after the invention of the stethoscope before doctors started using it. That’s where consumers come in. They can demand new technologies and more access to information from their doctors. “We have a rare opportunity going forward,” Topol concluded. “We just have to make it happen.”

Watch full video here.
See more photos here.
Buy the book: Skylight Books, Powell’s, Amazon.
Read expert opinions on the ethical challenges digital medicine poses here.

*Photos by Aaron Salcido.

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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).

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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.

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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.

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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.

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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.

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