Health+Benefits the May 2013 issue

Fully Exposed

Medical and scientific breakthroughs promise healthier lives while threatening privacy and ethical issues.
By Annmarie Geddes Baribeau Posted on April 22, 2013

But transforming these dreams into reality carries a hefty price tag and blinding risks. As rising consumer expectations pressure health insurers to expand their coverage, life sciences insurers struggle to anticipate the contingencies of approaching technologies. And while science pushes the envelope, our collective conscience must address ethical concerns in this braver new world.

Looking forward 30 years, science promises individualized medical care as unique as fingerprints. From pre-cradle to the grave, personalized medicine will require health care professionals to know their patients intimately—from their personal habits to their DNA. Personal medical information will support patient-centric prevention, detection and care that we can only barely imagine today. Future growth in body monitoring, telemedicine, DNA sequencing, “smart” diagnostic tools and treatments, and growing stem cell-based organs are significant factors that will make personal medicine possible.

Body Monitoring

The market offers a plethora of self-help wellness and health care technology that measures vitals such as blood pressure, heart rate and activity levels, says Mike Allen, whose company, Allen Management Consulting, specializes in technology-enabled strategies.

New types of monitoring are coming online constantly, Allen says, including a European-developed T-shirt that measures vital signs for patients with chronic obstructive pulmonary disease or kidney disease.

Functional technology is driving innovation, Allen says, but it is still in the “early silicon chip” phase. “There is going to be a lot of failure and false starts,” he says.

Continuously monitoring the body will be made possible through the convergence of biomedical electronics, smart sensors, wireless networks and related devices, including apps.

In the next 30 years, personalized monitoring equipment will become more commonplace in our homes and even on our bodies, says William Halal, a professor emeritus of management, technology and innovation at George Washington University and founder of TechCast, a virtual think tank that projects future technologies. “All the monitoring devices will feed an information system, and this will represent you and the way your body works,” Halal says.

“All the monitoring devices will feed an information system, and this will represent you and the way your body works.”

Halal foresees that this personal information system will pinpoint genetic flaws and even enable people to produce replacement organs. His organization estimates that by 2020 body monitoring will achieve a 30% adoption level in advanced nations.

Combined with telemedicine, the house call—that quaint medical practice from a bygone era—will return, this time virtually. Invoking the futuristic world of “The Jetsons,” many technologies are already coming together to make telemedicine a reality.

Dr. Eric Topol sees smartphones and other mobile devices as the hub of future medicine. Among other distinctions, Topol is director of the Scripps Translational Science Institute, professor of genomics at The Scripps Research Institute and author of The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care. “There’s going to be many choices,” he says, “but we are attached to our phones.” (He calls them “our peripheral brains.”) Already, he adds, portable devices are becoming medical dashboards, able to impart all sorts of real-time data about how a body is functioning.

Most measuring devices have limitations because they provide external measures, Topol says. But putting a nanochip into the bloodstream, he says, provides the “big edge” because much more information could be gleaned from inside the body. The chip would also furnish continuous data, so doctors could learn deeper and conceivably life-saving information.

“You have ‘Fantastic Voyage,’” Topol says, referring to the 1966 movie in which a team of microscopic doctors plunges inside a CIA operative’s body to repair a blood clot in his brain. Such interior monitoring will be considered “quite ordinary,” Topol says, and it will be used to manage or prevent various illnesses. “This is where the field can move to—true prevention,” he says.

Giving people access to, and control of, their medical information would solve a big problem, Halal says. “It would be in the cloud for the individual,” he says. “You might choose Google to keep your data.”

Personal medical information might also be stored in a nanochip inside the body, says Robert Langer, who, among other distinctions, is an institute professor at the Massachusetts Institute of Technology. Langer supports technology transfer to bring innovation to the market, has 815 issued or pending patents and has helped start 25 companies.

Like other health insurers and clinics, Kaiser Permanente is also reviewing and testing various telehealth technologies to ensure high-quality care delivery with the goal of continuous monitoring to avoid medical emergencies. Used to assist in reviewing symptoms and to gather and monitor vital signs and for health education, the approach’s goal is to encourage positive behavior, says Sean Chai, director of innovation technology services at Kaiser Permanente. Many patients can talk to their doctors on specialized medical-grade telecommunications systems in their facilities today.

In the future, clinicians and patients will be able to receive instant, real-time information on their televisions, computers and portable devices. There could also be virtual agents or avatars to provide health coaching or important medication reminders, he says. Kaiser is also looking into home sensors to monitor patients and address caretaker concerns.

To encourage wellness, Kaiser is exploring game techniques to engage patients and motivate positive behavior change. This would involve using game systems such as Nintendo Wii and MS Xbox Kinect in physical therapy programs to improve adherence, outcomes and patient satisfaction, Chai says.

“For all the promise of digitally driven healthcare, technology futures often contain equal parts of hope and hype,” Chai says. “[We] are sifting through the hype to develop an accurate picture of the benefits and using innovative technology, such as telehealth, to improve quality and affordability of care.”

“For all the promise of digitally driven healthcare, technology futures often contain equal parts of hope and hype.”

Kaiser offers a glimpse into the future of body monitoring and telemedicine through a YouTube video.

Unlocking the Human Genome

The human genome is the library of DNA information contained in the nucleus of each person’s cells. Containing 20,000 to 25,000 genes, it helps dictate the unique complexity of each individual. “Personalized medicine requires understanding the human genome,” Halal says.

An individual’s genome sequence is a precise map of his or her genetic makeup, says Jimmy Lin, president of the Rare Genomics Institute, a nonprofit organization that assists families with rare genetic disorders, and a research instructor at Washington University in St. Louis.

“Knowledge of this information may help diagnose diseases, suggest prognoses, individualize therapeutic options and even predict disease susceptibility and health risks,” he adds. Lin believes clinical exome sequencing will become the standard clinical test in five years, focusing mostly on those with cancer and rare genetic diseases.

When Topol had his DNA sequenced, he learned his susceptibility to certain diseases and drug sensitivity. He also learned his ancestral background.

DNA sequencing is also critical on the collective level. For individuals to benefit the most from DNA sequencing, millions of people will need to be sequenced to find the reference human genome and determine what the genetic code means.

“The more genomes we sequence as a society, the more information we have to truly annotate, decode and understand the human genome code,” Lin says. “Just like no man is an island, no genome sequence can be interpreted by itself.”

“Genomes can only be understood in terms of comparison,” he explains.

Currently, personal DNA sequencing costs $4,000. By the end of the year, Topol says it should cost $1,000, dropping potentially to $100 in five years. As sequencing costs become more affordable and data is more widely collected, medicine will be based increasingly on a genotype-based foundation. “With a large enough sample, we can start to unravel the genetic causes of disease and how to interpret individual genomes based on these databases of information,” Lin says.

In the future, sequencing and analyzing DNA will start when people are young. “In less than 10 years, DNA sequencing of all newborn children will be most likely routine,” Lin says.

“In less than 10 years, DNA sequencing of all newborn children will be most likely routine.”

Advances in knowledge of the human genome are also giving parents the ability to avoid flawed genes or choose their child’s gender. To avoid Tay-Sachs disease, for example, some Ashkenazi Jews are choosing embryos without the disorder. Tay-Sachs disease prevention has become a model for deterring other genetic diseases. Soon this list will include cystic fibrosis, sickle cell anemia and Huntington’s disease.

The ability to choose desirable traits in children will become more common, Halal says. “We are thinking in 2036, 30% of parents will be able to choose features of their children.” This will include sex, hair color, intelligence and height.

Smarter Diagnoses and Treatment

The correct treatment begins with the right diagnosis. By catching a disease early, doctors can develop personalized plans to retard its growth. Body monitoring will be a crucial part of improving diagnoses.

And through biotechnological advancement, molecular diagnostic tests also will detect changes in the DNA gene sequence that can influence disease risk and predict the likelihood of developing a disease.

Nano scale devices will be able to locate early disease presence because cancer cells, for example, have a different phenotype than healthy ones, says Gareth Hughes, president and CEO of Medical Nanotechnologies.

Diagnostic equipment will be smarter too. “An MRI tells you structural information. But it cannot tell you what is going on in the cells,” he says. There are also some tests available today that will tell how the patient will respond to chemotherapy, but these tests are pathology tests and require biopsies, Hughes says.

Rather than biopsies, diagnostic instruments in 30 years will provide imaging of personalized cellular information in real time, he says, which will help doctors select an appropriate therapy and monitor response.

Doctors will also decide how to treat patients based on the patients’ DNA. TechCast’s experts predict that individual genetic differences will guide 30% of medical treatment by 2025, plus or minus five years. Langer says data is already routinely collected to determine whether different responses to medication are due to genetic factors.

Genomic research and biotechnology are ushering in more effective drugs and delivery systems. These include microscopic particles called microspheres, which are engineered with holes just large enough to dispense drugs to their targets. Biotech microsphere and nanotube therapies are available and being investigated to treat various cancers and other diseases localized in a particular place in the body.

“You’ll be able to see nanoparticles going to the tumor instead of other parts of the body,” says MIT’s Langer. “The nanoparticle will have an arrowhead directing it to a tumor or the tumor’s blood vessels.” 

Biomedical electronics, which are already being used for pacemakers, limb stimulation, drug treatment and pain and nerve control, will also take medicine delivery to the next level. “You can put drugs in chips and activate them with an external signal,” Langer says.

This not only allows for more targeted drug therapy. It is also more effective treatment for diseases that require intermittent or different levels of drug therapy such as cancer, Acquired Immune Deficiency Syndrome (AIDS), diabetes and even personalized birth control.

These technologies also open the doors to gene therapy, which treats diseases by replacing, modifying or supplementing absent or abnormal genes. Using nano instruments, doctors will be able to insert healthy genes into the cells of patients to replace defective genes. Medicines already exist that can interfere with a defective gene and shut it down for some cancers.

Such impressive disease detection and treatment will eliminate some genetic illnesses, but probably not cancer. That disease is different, Hughes says, because it adapts to treatment, making it difficult to resolve. “Right now, we don’t even know which drugs will work for each patient,” he explains.

Hughes believes cancer will be better managed, like diabetes and AIDS, but he does not expect to see a cure in 30 years.

Growing Replacement Organs

Every day, more than 100,000 people in the United States are waiting for organ replacements. Another person is added to the list every 10 minutes, according to Donate Life America.

But in 30 years, people will be able to grow new organs with their own stem cells, experts say. “We think you will be able to replace most organs by growing them in 2024,” Halal says.

Using a plastic scaffold, MIT’s Langer says stem cells grow new tissue to form a matrix as the plastic dissolves. “It is really re-creating what happens in the body,” he says. Stem cells can come from bone marrow or even cell banks.

Bionic body parts are expected even sooner, possibly within the next decade, according to TechCast. These parts will be developed using a combination of computer chips, micro machines and other new technologies. Such possibilities were once limited to the vision of the “Six Million Dollar Man,” the 1970s television series whose protagonist had bionic implants in his right arm, both legs and left eye (or to its spinoff, “The Bionic Woman”).

In the future, artificial arms and legs could be thought-controlled with the help of chips installed in the nervous system and even have sensors to detect touch and micro motors to power joints. Researchers in Sweden have developed the first thought-controlled, fully implantable arm. Artificial retinas, which are under development, are continually improving using light sensors.

All of this will lead to longer and healthier lives. TechCast’s data suggest that around the year 2040, or shortly thereafter, the average lifespan could average 100 years. Trends leading in this direction are based on improvements in healthcare and lifestyle.

But how much the average person will benefit from these innovations is more likely to depend on insurance coverage and affordability than on technological advancements.

Ethical Implications

As medical and scientific advances continue, they will be fraught with ethical issues. “The technology imperative is, if it can be done, it will be,” says Arnold Brown, chairman of Weiner, Edrich, Brown, a strategic planning change-management consulting firm. But like nuclear weapons, he says, the consequences may or may not be good for humanity in the long term.

A huge proportion of healthcare dollars is spent on the last years of life. “Is it ethical to prolong life beyond the Biblical threescore and 10,” he asks, when it could divert resources from the young? Personalized medicine through body monitoring, telemedicine and DNA sequencing also raises privacy concerns.

To Lin, the privacy risks associated with DNA sequencing are the same as seeing a doctor or getting an X-ray or clinical test. “However, the information itself could be used in discriminatory ways.”

Congress has made efforts to prohibit discrimination through The Genetic Information Nondiscrimination Act of 2008 and the Health Insurance Portability and Accountability Act of 1996.

Older Americans and civil rights advocates are concerned about privacy, but the social media generation does not appear to care as much, says Arthur Caplan, head of the Division of Bioethics at New York University’s Langone Medical Center. Privacy “is a delusion,” Caplan says, when “the NSA [National Security Agency] is monitoring every single, little thing that interests them.”

Hack Away

And while the 1997 film “Gattaca” illustrates the negative implications of designer babies, you can expect that parents of the future will still want to select the traits of their children. They’re likely to make these choices much like parents today decide on infant daycare and private schools.

“I think some will say it is better to make children outside the body…to grow in incubators and not yucky uteruses,” Caplan says.

Some parents are choosing healthy embryos to prevent genetic illness. But at what point is this practice bad for society? This technology also creates more effective ways to practice eugenics.

Less than a century ago, 33 states had compulsory sterilization laws for those deemed to be unfit to reproduce for mental or physical reasons. (Recognizing its tragic eugenics history, Virginia recently approved $50,000 for each individual sterilized under its 1924 Virginia Eugenical Sterilization Act.) During World War II, Adolf Hitler sought to selectively eliminate classes of people in his quest to build a master race. The Chinese government later eliminated female fetuses to quell its population growth. If history repeats itself, the very technologies that can save humanity also have the power to undo it.

The ethical line gets crossed, Lin says, when we make value judgments on which individuals and traits are more desirable than others. “As a society, we should strive to value all life,” he says.

Regardless of ethical concerns, Halal says technology always wins in the end. “A good technology is unstoppable,” he says.

Annmarie Geddes Baribeau Contributing Writer Read More

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