I usually visit Pettibon’s work on my way back from teaching rounds with the medical teams in the Intensive Care Unit. Alone after raw encounters with broken and ailing bodies and disrupted lives, I often seek out the reminder: restoration may not be enough.

Pettibon’s work asks us not to accept the illusion of restoration to what was before. It calls on us not to lose lessons and opportunities that emerge through adversity. It reminds us that sometimes, in the seemingly unimaginable, we find an invitation to imagine anyway: to see our way forward, further than where our fates have brought us, beyond where we started.

I have visited Pettibon’s “Yes, but alas” hanging in its quiet hallway behind the chapel at least once a week since the pandemic began.

As I stand there, taking a minute to check myself, a thought revisits me: Maybe none of us, with our already strained bandwidth, can take on all the moral challenges raised by this pandemic. But perhaps we can take on some, or even one, of the concerns that we may not have recognized before.

Perhaps we can make space and time to accept and offer invitations to listen, whether in clinical or community contexts. We can think differently about our collective challenges, imagining beyond what we once thought we knew—not restoration, but regeneration.
 
II.
As a clinical ethics consultant, educator, and public scholar, I engage questions about complex moral experiences in healthcare settings. I work with patients, families, nurses, physicians, social workers, chaplains, lawyers, and administrators. When someone calls for a clinical ethics consultation, it is because they seek support in a crisis: there’s confusion or miscommunication to think through… an impasse to overcome… the aftermath of a disease or accident with which they must now learn to live. My practice is to make space and time for those involved to communicate and connect with each other, confronting what James Agee called “the cruel radiance of what is.” Together, we walk through their concerns.

Navigating the unwelcome uncertainties of giving and receiving care means brushing against structural factors that shape interpersonal encounters. Communal and institutional politics; local, state, and federal law; theoretical frameworks; and public health policies intersect actual people’s lives. In such moments of crisis, suddenly we see our taken-for-granted ways of being in the world, and often-unspoken values, come into sharp focus. Especially when they collide with those carried by other people.

I’ve learned that those collisions can be hard. In moments of uncertainty—medical and moral—it can be daunting to see beyond oneself, to imagine another’s experience and hear their perspectives. We have to choose deliberate understanding: what social psychologist Pierre Bourdieu describes as a focused attention to different people that lets us see them as whole persons, not just caricatures or types. Ethics consultants strive to make space in those morally and emotionally charged moments for people to do that: to pause, to see and hear each other and find ways through, as whole persons, together.
 
III.
COVID-19 hasn’t changed the character of clinical ethics work, but I have begun to see new parallels between conversations taking place in the hospital and conversations unfolding in our local and national communities. On patient wards and in neighborhoods, moral encounters emerging from the pandemic remind us of commitments and connections we often overlook in our everyday, pre-pandemic hustle and bustle. More clearly than ever, the “we” encountering moral experiences includes not only family and neighbors, but also unknown strangers, near and far, on whom we are dependent and from whom we can learn.

The pandemic has laid bare and exposed our interdependence in ways that deeply challenge the American mythos of rugged individualism. It has exposed the raw injustice we all suffer as what philosopher Herbert Spiegelberg calls “fellows in the fate of existence”: those persistent and deeply ingrained inequities that are taken for granted simply because some are born to more resources, safety, health, and community than others.

All anyone has to do, in any of our communities, is look around the neighborhood to find someone experiencing a very different pandemic than themselves. If some aspect of This Pandemic Life is difficult for me, that gives me an opportunity to consider how it might be for a neighbor, in different circumstances.

Making connections to these different experiences—even at a near distance within our neighborhoods, religious congregations, school communities, and “work families”—can help bring to light individual needs and challenges we may not have seen before. Those connections can introduce us to resources, coping mechanisms, and networks of support we haven’t yet considered. We haven’t yet had to, until now.

Inviting these connections is a kind of moral engagement: a listening and telling, an affiliation, as the philosopher and ethicist Richard M. Zaner has written. I help make space for these conversations in my clinical ethics work. They can be an avenue for understanding within and beyond our communities, even—or especially—in a global pandemic.

This kind of deliberate moral engagement feels strange for many of us—especially mid-pandemic, when everyday challenges make it seem flatly impossible to focus on how others feel. And yet, even in the collective upheaval, engaging in this way offers real possibilities as we look towards our post-pandemic lives.

Can we open to real curiosity, seeing near and far neighbors as they are, rather than as we have imagined? Can others’ perspectives help us see ourselves, our worlds, in new ways, rather than as we have imagined, or hold in idealized memory? Can we recognize that restoration and return to the pre-pandemic world isn’t possible, or even truly desirable?

If we are able to “see with new eyes,” as Marcel Proust invites us, perhaps we can connect our individual, interpersonal experiences and needs to our communal, collective challenges and actions.
 
IV.
This comes across vividly when we consider the COVID-19 vaccine rollout. Vaccines are closely connected to hopes of returning to normal, to what we have always known and done. Yet in the difficult processes of allocation, distribution, and acceptance, we can see why a return to before is not possible—why restoration cannot be enough.

We should not continue, or consider returning to, a society where unequal access to vaccines takes egregious health disparities and widens them to the point where they are obscene. We should take a hard look at efforts of the well-resourced and privileged to move ahead in vaccine allocation lines. We should direct resources to communities struggling with diseases of poverty and limited access to primary care. We should learn from evidence of generational trauma that impacts community health and a healthcare system that systematically disenfranchises and damages people of color. We should engage with concerns around vaccine hesitance. We should alleviate the burdens on tech-limited Americans (rural and urban, older and poorer) that have made it so difficult for them to navigate online sign-up systems. We should start paying attention to distribution difficulties, material logistics, and systemic inefficiencies that few have had to know or worry about before.

Even as thumbnail sketches, our current vaccine challenges highlight pre-existing conditions that we can no longer ignore.
 
V.
One year into this overwhelming pandemic, I recognize that accepting responsibility for seeing with others and thinking differently feels heavy. But pandemic experiences also create possibilities for new ways forward. We have had to practice in own lives: seeing anew the way things were, revamping our activities and routines, and making things work in the new normal. We have adapted again and again, even as our surge capacity has been depleted and we’ve despaired that we can’t go on.

We go on (we hope).

Instead of following breadcrumbs of our deep yearning for pre-pandemic life and how things used to be, we continue into the unknown. We have learned by ourselves, from others around us, and from sheer necessity that we can learn to see differently, that we can make a deliberate choice to listen and tell, to understand, to go forward. Not back to before.

In clinical ethics encounters and community moral engagements, we can learn from each other in this unavoidable pause. We can carry on, together, into recuperation, rejuvenation, renovation, regeneration.

After all, as Pettibon reminds me every time I take a moment to stand in front of his beautiful, provocative print: We’re not going back. Too much has been learned—often hard-gained. Too much work lays ahead, for individuals and communities. Too many beloved people have been lost to be forgotten.

My hope is that none of us will paint over these months, grabbing at the blue sky we think we remember.

The post A Medical Ethicist Asks How Can We Regenerate, Not Restore, Life Before COVID appeared first on Zócalo Public Square.

But just two years later, historians David Merritt Jones and Gerald M. Oppenheimer argued that the alleged sugar conspiracy was nothing but science as usual. As they pointed out in an article in Science, the Harvard doctors already thought fat was to blame for heart disease, and had previously published influential research supporting this theory. Meanwhile, the main advocate of a link between sugar and heart disease, John Yudkin, was himself funded by the dairy and egg industries. In a piece for Slate, Jones and Oppenheimer criticized the critics of the sugar industry for their “highly selective and profoundly flawed interpretation of this history.”

Who is right? Which story should we believe? To answer this question, we need a more nuanced understanding of the many ways that industry can—and does—influence science.

The simplistic picture of how this influence works involves fraudulent science for sale: a shady industrial representative delivers a briefcase of cash to some scientist—who promptly publishes the desired results. But in researching this topic, we found that more often representatives of industry are far more sophisticated, using subtle techniques that can shift scientific consensus and which are much more difficult to detect. In fact, they often get the policy results they want without committing fraud—and often they don’t even have to subvert the norms of scientific practice to do so.

One technique they use to pull this off is what we have called selective sharing. Selective sharing relies on the fact that all scientific evidence is probabilistic: Not everyone who smokes gets cancer, and not everyone who gets cancer smokes. This means that some well-run studies, free from industry influence, will yield misleading results. In the case of tobacco, dozens of perfectly good studies have found no link between tobacco products and cancer. Of course, these studies are outliers. Hundreds more have found those risks, and looking at the full body of evidence leaves little room for uncertainty.

But in the hands of tobacco industry propagandists, outlier studies become powerful weapons of misinformation. As Naomi Oreskes and Eric Conway report in their 2010 book Merchants of Doubt, in the 1950s, a research committee funded by Big Tobacco distributed bimonthly pamphlets selectively reporting on studies that showed no link between tobacco and cancer. These were sent to hundreds of thousands of journalists, doctors, and policymakers. There was no fraud involved in this technique, and the research described in the pamphlets was often not funded by or otherwise linked to the tobacco industry. In this case, Big Tobacco did not need to influence scientists to influence beliefs about what the science showed.

The key to this strategy is to bias the data seen by the public. The data may be real, independently generated, and of very high quality, but if the people who use that data to make decisions see only a misleading fraction of what has been found, their beliefs are more likely to be false.

Even more pernicious is when industrial and political groups shape the body of evidence that is produced and published. One subtle way in which industrial groups influence the production of scientific evidence is through what philosophers of science Bennett Holman and Justin Bruner call industrial selection.

Industrial selection takes advantage of the fact that scientific research is highly diverse and even scientists working in the same field will use a variety of research methods and make distinct assumptions that can influence their results. This diversity of practice can mean that some research groups, by virtue of the methods they have adopted, are more likely to generate industry-friendly results. Industry can then select for funding only the scientists who are already likely to produce the favorable results.

Holman and Bruner illustrate this point with a stark example. Heart arrhythmias often precede heart attacks, so in the 1970s researchers began testing drugs intended to suppress arrhythmia. Their goal was to reduce heart attack deaths. But while some researchers ran studies testing whether the drugs actually reduced mortality, others simply tested whether the drugs reduced arrhythmia. Pharmaceutical companies funded scientists who had adopted this latter method much more than the former, allowing these scientists to run more studies and produce more data. The result was a glut of papers from labs testing for arrhythmia suppression only—and finding that the drugs indeed worked to stop arrhythmia. On the basis of this research, doctors started prescribing anti-arrhythmics.

But other studies showed that the drugs actually increased mortality, even though they prevented arrhythmia. Yet it took years for this fact to become clear—and in the meantime upwards of one hundred thousand patients may have died as the result of anti-arrhythmic drugs.

In this case, again, individual researchers continued producing the research they would have produced otherwise. They just produced more of it, and spread it more widely, because of the extra funding industry provided. Individual scientists were not corrupted, but nonetheless the process was corrupted, leading to thousands of deaths.

The sugar industry offers another version of the same problem. As we saw, Big Sugar contacted and funded researchers who were already convinced of the dangers of fat, but not sugar. In fact, the Harvard researchers involved in nutrition research claimed that the money made no difference to the research they conducted. But that does not mean industry did not influence scientific outcomes. Funding researchers who were already convinced that fat was responsible for heart disease is just another way to use industrial selection to shape the evidence available about the dietary causes of heart disease.

This is not a fine point. There is real danger that if we misunderstand industry influence on scientific research, we can fail to recognize it. Industrial selection and selective sharing do not involve fraud or individual corruption. But they can drastically alter the path of scientific discovery, how policymakers respond to it, and the lives of millions of individuals.

The post How Powerful Interests Use Science to Sway Public Opinion appeared first on Zócalo Public Square.

ASU President Michael M. Crow, the evening’s moderator, opened the discussion in front of a full house by asking Venter how he went from serving as a Navy corpsman in Vietnam to running three scientific institutes—and predicting that human beings will one day reproduce organisms synthetically.

“As you might imagine, it wasn’t a linear route,” said Venter. As a medic in Vietnam, he learned that knowledge is critical to saving lives. His plan was to attend medical school, but got hooked on science instead as an undergraduate at UC San Diego. Publishing a scientific paper on how adrenaline works “was the most thrilling thing I’d done,” said Venter—a self-identified “adrenaline junkie.”

From studying adrenaline receptors, he moved on to trying to sequence a gene associated with adrenaline, laying the groundwork for a number of scientific firsts: In 1995, he sequenced the first and second genomes. In 2001, he sequenced the first human genome. In 2010, he created the first synthetic life form.

Today, said Venter, we can interchange the digital code of ones and zeroes with the four-letter code of DNA. “DNA is our software,” he said. “Every species on this planet is a software-driven system.” And our ability to transition between the digital and DNA worlds has huge implications: Today, biology can be sent through the Internet.

Venter and his team are now in the process of sequencing thousands of human genomes each year so that by 2020, we will have millions sequenced. This data, he said, will give us the ability to know precisely “what’s nature and what’s nurture” within the next decade.

This knowledge, said Crow, will have enormous implications, from human longevity to our understanding of race. But what are we going to do with it? Are we going to be able to close the gap between “natural science”—what we know and understand—and “design science”—what we do with what we know?

“It will be overwhelmingly tempting for humanity to refrain from using this knowledge to modify our species,” said Venter. He referred to a survey from 15 years ago in which a surprisingly large number of respondents said they’d choose to genetically modify their children. It’s not unreasonable to want to eliminate lethal diseases that are not treatable, he said, but other traits pose problems. Manic depression is a disease that’s difficult to treat, yet people who are manic depressive are also among society’s most creative. Could curing manic depression wipe out the creativity of our species? We’re a long way from having the knowledge we need to take such steps, cautioned Venter.

Venter’s current research interests include human longevity and how we can extend the healthy, high performance human life span. There is no a priori reason that biological systems have to wear out, said Venter: “There’s no reason to think there’s an absolute, finite limit on human life.”

And what exactly is synthetic life? Crow asked Venter to explain how he created a bacterial cell entirely out of synthetic DNA.

Venter explained that his team took a common bacterium, removed the operating system, and put in a synthetic operating system. Then, measuring every protein in the cell, they found there wasn’t a single protein from the original cell. “You change the software”—the DNA—“you change the species,” he said.

The idea of creating new life forms comes with serious ethical and safety concerns. Crow, referring to Isaac Asimov’s “Three Laws of Robotics,” asked Venter if he had rules of engagement for synthesized life.

Asimov’s rules for governing robot behavior sort of apply, said Venter. We’re trying to create things to help humanity, not eliminate it. And we don’t want the things we create to become weapons of war, he said.

What, asked Crow, are your worries about human enhancement?

Venter noted that a knee replacement is a kind of enhancement. But he does have concerns: In the new do-it-yourself biology movement, people perform experiments at their kitchen sinks that previously would have been limited to laboratories. Ebola only has eight genes, said Venter; could kids, trying to be wise guys—like computer hackers—try to synthesize the Ebola virus?

“Our society tends to very quickly trivialize things,” said Venter, “and forget the ethics and the implications and the broader impact on society because it’s Kardashian time or something. We need to be smart about these decisions.”

Fifty or 100 years from now, said Crow, when most of the things you’ve dreamt have occurred—and the impact has been a net positive—what will be the most fundamental and significant changes resulting from digital biology?

Venter said that it was impossible to answer the question without looking at biology as a whole. The way the world works now, if digital biology extended our lifespans to 250 years, we would quickly overwhelm the planet. But, if we could use sunlight and carbon dioxide as our carbon sources instead of coal and oil, perhaps we could find a way to increase our lifespan in a way that’s healthy for humans and the planet.

Digital biology has the potential, Venter said, to create a new Industrial Revolution. We’re not just trying to change life but all human processes. “It’s a giant experiment, and hopefully we’ll be smart about it,” he said.

The audience question-and-answer session included more queries about ethics and the possible dangers of synthetic biology.

How could a synthetically created virus be stopped?

Venter said that we’re in far more danger from new emerging infections than we are from synthesized viruses. Synthetic biology already has combatted such infections: When the H7N9 flu virus broke out in China, Venter’s team successfully created a vaccine based on a digital copy of the virus Chinese scientists sent to the U.S. We can now transport viruses without putting people in danger—and transport vaccines, too.

What can we do about scientists who don’t share Venter’s ethical concerns dealing in genetic engineering?

Venter said that society faces the same challenges with any technology. “You can kill somebody with a hammer; you can build a hospital with a hammer,” he said. The U.S. does have stopgaps in place to monitor do-it-yourself scientists, and laws that govern lab practices.

The rules aren’t that complicated, he said—but scientists must learn them, and must work in the proper environment to ensure that their experiments are performed safely and without catastrophic consequences for society at large.

The post Life—As We Know It—Is in His Hands appeared first on Zócalo Public Square.

In California, scientists have created a breakthrough antimalarial drug—baker’s yeast made in a lab that contains the genetic material of the opium poppy. The drug has the potential to save millions of lives—and to ensure drug production that independent of poppy flowers. At MIT, researchers are working on a way for plants to “fix” their own nitrogen, so farmers will no longer need to use artificial fertilizers. And, in the far future, scientists and NASA researchers are looking to create a “digital biological teleporter” to bring to Earth life forms detected on Mars via a sort of biological fax.

What should we worrying about in this moment of tremendous, and potentially cataclysmic, scientific discovery? In advance of the Zócalo/Arizona State University event “How Will Synthetic Biology Change the Way We Live?, we asked experts the following question: Soon we’ll be able to program DNA with the same ease we program computers. What new responsibilities will be imposed on us?

The post With Great Scientific Power Comes Great Responsibility appeared first on Zócalo Public Square.

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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