Immersive Technology for Social Change

I recently attended the Immersive Technology Summit, which was a daylong showcase of how organizations, storytellers and researchers are using technology to transport people to alternate realities. The term Immersive Technology “refers to simulated realities, interactive devices, and applications that are combined to create an ‘immersive’ experience into technology. It includes, but is not limited to, technology that blurs, if not erases, the line of distinction between the confined physical world and the boundless digital world.”

As Harold Tan, one of the summit organizers, noted when talking about why immersive technology is important, life is about experiences, and technology can be used to immerse yourself in other people’s experiences; you can live a hi-res depiction of an artist’s imagination.

Though I was only able to attend the morning sessions, I was pleased to note how many projects have nonprofit applications. I’ll share some of the highlights here.

Fred Nikgohar of RoboDynamics described how robots are being used to bring people together across time and space. Robots are serving as a mobile telepresence to bring together geographically dispersed talent within a workplace, or to allow an out-of-town manager to be present to oversee his employees on the factory floor. Fred noted that it only takes an average of five days for staff to make the mental adjustment of referring to the robot representation by the remote employee’s name. This has obvious applications for telemedicine and education in geographically remote areas.

Mark Bolas at USC’s Institute for Creative Technology demonstrated how his lab is creating virtual environments for training and simulations, transforming real space into a walkable virtual location using virtual reality headsets and warehouse space. Military and hospital simulations stretch space through redirection tricks like flipping the door to a different wall without the user noticing to minimize the physical space needed. One of the demonstrations in the exhibit hall showed another way of allowing the user to explore a virtual location with a stationary hamster ball-type of apparatus synched with the view in the VR goggles.

Bonnie Bucker and Garry Hare of Imagined Communities talked about their design-based educational experience that connects students with their communities. After rendering their neighborhood in 3-D, youth identify areas of need in the community to reimagine how it could be improved. For example, a blighted area could be turned into a community garden. The youth give virtual walking tours of the neighborhood, and residents can vote on the changes they like the most. The new design can then be realized in the real world. I loved when Garry said, “I’m interested in the political troublemaking aspects of augmented reality.”

Jacquelyn Ford Morie, also from USC’s Institute of Creative Technologies, talked about the virtual humans and avatars the ICT has created for various purposes. She demonstrated Ada and Grace, the virtual human museum guides at the Boston Museum of Science. They can understand and respond to natural spoken language, engaging visitors in both explaining the science exhibits and in demonstrating applied computer science.

In addition, ICT created the “Coming Home” project (also known as Transitional Online Post-Deployment Soldier Support in Virtual Worlds), which provides mental health support to returning soldiers in Second Life. This virtual veterans center provides real-time in-world stress reduction and mindfulness classes and areas where soldiers can come together for peer support. This includes the Warrior’s Journey – a narrative component where individuals’ avatars enter a tower and follow their choice of classic warrior stories from various cultures that depict values like duty and dedication. At the end of the journey, they meet the avatar of that character and can have a conversation with him. This is an opportunity for returning soldiers to “rewrite” and reframe their own personal stories, which they may feel conflicted about. They can then add their own story online by uploading pictures and text.

I think the technology is getting to a point where nonprofits can start looking at whether the immersive approach can help them further their goals. As a panelist noted, when “Jackass 3D” gets the highest weekly box-office ratings, it means that immersive media is making its way to the mainstream. I’m sure we can find better uses than that!

For more reading on augmented reality:

Photo Credit: janjochemo

Transmedia Storytelling for Social Marketers: A Sample Campaign

Lately, I’ve been talking about transmedia storytelling to whoever will listen. If you’re not familiar with this approach, transmedia refers to a story that is told on multiple media platforms, with different parts of the story appearing in different places. The readers/viewers may enter the story at various points, and may need to solve puzzles or follow clues to discover the different nodes of the story. Transmedia is different from multimedia, which would be a retelling of the same story told using different media (e.g., a movie, a graphic novel, an audiobook). Beyond using transmedia for the sheer joy of telling a story, this approach is now often used to promote television shows and movies, as well as marketing products. Want to try out a quick example of a transmedia story in action? No Mimes Media has created a 10-minute alternate reality game (ARG) you can experience online. (Hint: Look for clues to get to each of the next parts of the story and keep your phone nearby.)

Why Use Transmedia in Social Marketing?

For all the reasons that the entertainment education approach works to change knowledge, attitudes and behaviors, transmedia storytelling has the potential to match and exceed that success. Entertainment education-based social marketing has traditionally focused on “product placement” of health and social issues within the plotlines of television shows, radio serials, movies, video games and other individual media. When someone is wrapped up in the plotline of a show and their favorite character becomes sick or models a positive behavior, that person is more likely to remember information delivered in the course of the program and desire to act on it.

In a transmedia story, you are immersed in the plotline either as the main character or as you get to know the characters and their world from many different angles. Often, transmedia stories are told in real-time, with the characters posting to their Twitter accounts, writing blog posts and creating YouTube videos. They may come to feel like friends, especially if the audience is encouraged to interact with the characters. This type of immersive experience can make a strong impression on knowledge, attitudes and perceptions of social norms, and can motivate action.

What Might Have Been

Transmedia is one of those things more easily understood with a tangible example, so I spent some time thinking about how I might structure a campaign. I remembered that a couple of years ago, as part of the Great California ShakeOut (a statewide earthquake drill), the event included a simulation game called After Shock that did not quite live up to its great potential. The idea was that during and after the earthquake drill, participants would use blogs, Twitter, video, photos and more to document what happened to them personally during the “earthquake” and how they were dealing with the aftermath. It was a fun, exciting idea, and I played along, startling my Twitter friends and posting to the blog on my account at the site. Many others did as well, with blog posts, photos of “earthquake rubble,” and other creative stories that showed they had thought through the implications of how an earthquake would impact their lives. Unfortunately, there was not much direction from the coordinators as to what we were supposed to do, and participation fizzled. (At least from my viewpoint, I didn’t see much happening on the site and did not receive any clear instructions to help me continue.)

What’s Shakin’? Earthquake Preparedness Transmedia Campaign

I’ve put together a sample transmedia campaign that addresses the flaws of what After Shock could have been, with the goal of motivating earthquake preparedness in Southern California. I was inspired by Gary Hayes’ transmedia worksheet (below) and the creativity of Luci Temple’s hypothetical transmedia case study based on the television show “V.”

Objectives

What’s a campaign without objectives? Here are the main ones I’d be shooting for:

  • To increase the number of people who know what to do to prepare for an earthquake.
  • To increase the number of people who know what to do during and immediately after an earthquake.
  • To increase the number of people who believe that being prepared is important and doable.
  • To increase the number of people who create a family emergency plan.
  • To increase the number of people who have an earthquake/emergency kit in their homes, offices and cars.
  • To increase the number of people who take preventive measures to secure their homes to prevent damage during an earthquake.

Narrative

In transmedia storytelling, the story narrative is often in the background or not visible at all. Designers must write the backstory and timeline, and then identify the “artifacts” (tweets, postcards, YouTube videos, etc.)  that the characters create as a result of that story. It’s often up to the participants to piece together exactly what happened, and where they might need to read between the lines.

Here’s the basic narrative of a possible storyline (yes, it’s kind of silly), and afterward we’ll look at how the transmedia campaign could bring it into being:

Shaky McShakerson works in downtown LA as an IT guy in the City’s Bureau of Important Processes. He’s married to Terra McShakerson, who works out of their house in Sherman Oaks as a photographer specializing in doggie fashion. They have two kids – Tembla (4) and Shaker Jr (1).

10:36 am Tuesday morning, a 7.7 earthquake hits LA, centered in Hollywood. Shaky’s at work – he has to help out with the city’s response. Terra is at a doggie fashion shoot in Pasadena. Tembla is at preschool and Shaker Jr. is with Terra’s mother in Van Nuys.

Shaky and Terra can’t connect with each other via phone. They had no plan for emergencies and have no idea what condition their home is in. The immediate aftermath of the earthquake is chaos: a 405 freeway overpass is down, traffic lights are out across the city, they can see smoke from several locations in the distance. Finally they are able to connect with each other via Twitter, but Terra still can’t reach her mom or the preschool.

Shaky is part of the emergency response and is responsible for setting up a blog to keep people informed through official channels. He can’t leave his post downtown, so Terra is on her own.

Terra jumps in the car and tries to move as quickly as she can from Pasadena to Van Nuys. She runs into many roadblocks along the way. Finally she arrives at her mother’s house, which is intact, although several houses on the street have collapsed chimneys and broken windows. She sees that her mother and Shaker Jr are fine, but she needs to get to Tembla. She arrives at the preschool and sees that it is in shambles. Everyone has been evacuated and parents are freaking out looking for their kids. Finally someone remembers to call the emergency out of state phone number that was given at the beginning of the year and they find out that the teachers brought the kids to the elementary school yard down the street. She collects Tembla, who is very upset and traumatized.

She takes the children back home, and discovers that their house did not fare very well. Gas is leaking, and it takes a long time for her to find a wrench and the shut-off valve. The house is full of broken glass, the floor is covered with what had been on the shelves, and the furniture has traveled across the rooms. The electricity is out, and the water does not seem to be working either. Terra sets to work trying to figure out what she needs to do now and how to begin to recover.

The days and weeks that follow include some major aftershocks, anxiety attacks from Tembla, and the realization that they should have been much more prepared. They don’t have enough food, water and medical supplies. The city is not recovering very quickly. The survivalist neighbors who they always thought were crazy for storing months worth of food are the only ones on the block who are doing well. Terra’s best friend Florence is a nurse and shares stories of what she’s seen in the hospital.

Terra and Shaky decide to get prepared for the next disaster and put together their supplies. So when a 6.1 aftershock hits, they are ready and able to deal with it, and get on with their lives without much hassle.

The Transmedia Campaign

1) Billboards will be posted around the city for “Terra’s Doggie Fashion Fotos” including the URL (ads will be so ridiculous that people look for the website to see if it’s a joke). Also, street teams passing out postcards with the same image/URL at gathering places around LA.

2) A website for Terra’s business will include her phone number (with voice mail message) and links to her Facebook page and Twitter account. The text will use earthquake metaphors as clues for what the campaign is about and provide insight into her personality and lifestyle.

3) Terra’s Twitter account will be the main driver of the narrative (with tweets also going to her Facebook page), and here is where we will also meet Shaky and Florence via their accounts. Quite a bit of interaction will have already occurred before the campaign begins. When the earthquake hits, we can see Terra’s panicked response and her attempts to reach her family. She and Shaky reach each other via Twitter. She urges people to call her on her cell if they know anything about her mom and kids.

4) When people call her cell phone number, they’ll hear her message about what she’s seeing on the streets as she’s trying to get to her family and her relief as she arrives at her mother’s house. She uses Twitpic to post pictures of the damage she sees all around.

5) Meanwhile, Shaky is setting up a blog for his city department that provides updates on what’s happening around the city in terms of emergency response, as well as safety information. He invites people to post comments about what happened to them during the earthquake and whether they were prepared. He shares the “official” department website and phone hotline that people can call over the next week for updates.

6) Once back at home, Terra tweets about the challenges they are facing and looks for information on what to do to prevent any further damage. She finds a smartphone app and companion website (created by the campaign) with earthquake preparedness information and shares that information on Twitter.

7) Over the next week, Terra uses Twitter to give updates on what she’s doing to prepare for the next earthquake, and uploads some video to YouTube. She posts information about caring for pets in earthquakes on her business Facebook page. Shaky uses the blog to give tips on preparedness and to invite participants to a live event.

8) The campaign concludes with a live event coinciding with the Great California Shakeout, where Terra and Shaky make an appearance to urge earthquake preparedness (and to take doggy fashion fotos). Those with smartphones will be able to see a simulated aftershock in real time via augmented reality, to reinforce how to respond.

There are many more touchpoints we could add (e.g., TV, radio, live chat, etc.) but this gives you a flavor of how it might all work together. Of course, keep in mind that this approach can only work if members of your target audience are already using most or all of these media. You would need to do research with them to find out what media they use, and what their current knowledge, attitudes and behaviors are, before jumping into creating the campaign.

Any takers?

Some Transmedia Resources (Updated 6/30/10)

    Photo: chiaralily

    The Path to Health Marketing Collaboration

    When’s the last time someone wrote a superhero comic about people in your profession? Sure, if you’re a reporter, nuclear scientist or even a reclusive millionaire, you’re used to this type of thing. But we health marketing types are usually the ones on the development side of the media, not the target audience. So I’m sure you’ll be as excited as I was to discover that my longtime blog friend Fard Johnmar of Envision Solutions and the HealthCareVox blog has created both a fun set of different types of media to draw people like us in, and a more serious project that underlies it.

    His mission is to bring together people who work in health marketing communications across disciplines so we can learn from each other. He calls this the Path of the Blue Eye — a rather zen-sounding name with accompanying mantras that help us do our jobs more effectively.

    Fard graciously agreed to share more information about the origins of the project and its different components with my readers via an email interview:

    What spurred you to create the Path of the Blue Eye?

    I was motivated to develop the Path of the Blue Eye project in response to two statements, both of which begin with the words “I wish.” They are:

    • I wish I knew that.
    • I wish we had a place to collect this information.

    Over the years, I’ve learned about beneficial data, case studies and other info that would be useful to people across the health marketing communications industry. I often share my knowledge in conversations with pharma marketers, public health experts, social marketers and others. Many times, I find that people are not aware of interesting and successful campaigns taking place in industry segments they do not work in. For example, people in pharmaceutical marketing are sometimes not knowledgeable about campaigns launched by government agencies that leverage social technologies. After our conversations, people will sometimes nod their heads and say: “I wish I knew that.”

    In addition, I have had many conversations about how we need a place where people can quickly and easily share information with their peers – especially with those working in other parts of the health marketing communications industry. They say: “I wish I we had a place to collect this information.”

    The Path of the Blue Eye project is designed to grant each of these wishes by:

    • Fostering knowledge sharing across health marketing communications industry segments and silos.
    • Providing people with tools they can use to quickly share interesting information with others working in the industry from around the world.

    The key word here is interdisciplinary. We are trying to reach across silos and centers of practice rather than working within them.

    How does this project fit in with the work you have been doing with Envision Solutions?

    The mission of Envision Solutions is to help health marketing communications pros become more efficient and successful. I think the Path of the Blue Eye project helps us to achieve this objective.

    Can you tell us about the different components of this project and how they fit together? How will you phase them in?

    The core of the project will be an online collaboration hub we are currently building. It will enable people in health marketing communications to:

    • Quickly access and share data, case studies, news articles, blog posts and other content relevant to the field.
    • Ask and answer questions from their peers.

    Currently we are the pre-launch phase of the project. We are leveraging the comic, Facebook, Twitter, e-mail and other communications channels to spread the word about the project and attract a diverse group of people who believe in what we are trying to accomplish. I am happy to say that (as of this writing), nearly 80 people have “joined” the project via e-mail, Facebook and Twitter. We launched Path of the Blue Eye about a week ago, so I’m very pleased with the progress thus far.

    In phase II, we will invite a select group of people to help us conduct a series of road tests on the collaboration hub to help us iron out any final kinks in the system. After this, we’ll launch the hub and begin our work in earnest.

    I’m also very excited that we’ve been able to develop some strong partnerships with prominent organizations and businesses over the last few months. They have agreed to help strengthen the hub by providing information to the Path of the Blue Eye community when it launches.

    How would you define the “Path of the Blue Eye?”

    The Path of the Blue Eye is represented in the comic by a series of six mantras. These represent habits and activities we believe will help people forging careers in the health marketing communications industry achieve success.

    Who are the main groups you’d like to reach and what are some of the ways people can become involved with this project?

    We are trying to reach a diverse range of people working in all areas of the global health marketing communications industry. Everyone is welcome, including social marketers, public relations professionals, advertisers, pharmaceutical/biotech marketers, public health communicators, academics and others.

    Given the current intense interest in social media it is important to note that the site wlll not be focused solely on social communications channels and techniques. Rather, we want people practicing in all areas of the field to feel comfortable participating in and contributing to the hub.

    Currently, people can participate in the project by:

    • Showing their support for the project by joining our Facebook group, Twitter community or signing up for our e-mail list.
    • Spreading the word about the project to their friends and colleagues.
    • Considering becoming contributing or guest authors on the project’s blog Walking the Path. We are looking to build a blog that features a diverse range of perspectives from people around the world. A few people have accepted our invitation to participate, but we are always looking for more authors. Currently, guest authors are helping to produce a series of blog posts focusing on what collaboration means to them.

    Once the hub launches, people will have other ways they can contribute to the project.

    I love the comic book! I’m sure it’s the first time that health marketers have been featured as superheroes. What was your thinking behind using this medium? Can we expect to see this as an ongoing series?

    I’m really glad you like the comic! I decided to commission the comic because I wanted to:

    o Create a mythology focusing on the work of health marketing communications pros. We are often behind the scenes, creating campaigns for others, so I wanted to celebrate what we do.
    o Attract a broad range of people to the project.
    o Encourage us to have fun and enjoy the work we do each day

    I also want to use the comic to expose more people in our industry to transmedia storytelling techniques. There’s a lot more going on with the comic than meets the eye, so I encourage people to dive deeper by participating in the SMS component of the project. Not many people have accepted our invitation yet, but I hope this changes in the coming weeks. I also hope people enjoy the comic’s soundtrack.

    I hope we’ll be able to produce future issues of the comic. If people want more we’ll continue the story.

    How would you like to see the Path of the Blue Eye evolve over time? What would it ideally look like five years from now?

    Ultimately, I’d like to see the project evolve into a strong, self-sustaining, diverse, interconnected global community of health marketing communications pros.

    Five years from now, I hope that the community will have become a go-to resource for people trying to improve their skills and develop better health marketing communications campaigns. We want to help people become better at what they do. If we achieve this, I think the project will be successful.

    ***
    I wish Fard great success with this project, and I am excited about being part of it as well. I hope you will also consider participating in some way, as the whole profession will benefit as more people get involved. We can all walk the path together, which makes getting over the hills much easier.

    Marketing Games for Health

    The Robert Wood Johnson Foundation invited me to write a guest post on its Pioneering Ideas blog, along with several other people who are investigating how games can be used to promote health. This guest blogger series is tied into the 2009 Games for Health Conference, which happened a couple of weeks ago, as well as a recent report from the Sesame Workshop’s Joan Ganz Cooney Center, which looks at how video games can be a positive force for children’s health.

    The question they posed for us to answer was:

    “There is a growing consensus that digital games can be deployed to support learning and behavior change for positive health outcomes among children. What do you think needs to be done to increase the use of digital games for this purpose?”

    In my guest post, I look at the question from a marketing perspective to think about how to increase the acceptability of health games and to encourage their development and use. My post will be up on Monday at the Pioneering Ideas Blog. (I’m on my way out of the country for a week, but will update with the specific link to my post as soon as I can.) I hope you’ll take a look at it and leave a comment with your feedback and perspective.

    Taking Social Actions


    I’ve been watching with interest the evolution of Social Actions, a relatively new service that helps you find things you can do right now for the causes you care about. The site aggregates “actionable opportunities” from 30 different social action-oriented sites like Change.org, Idealist.org, Kiva, DonorsChoose.org and others. With the proliferation of so many cause-related social networking sites, it’s helpful to see everything in one place. The Social Actions Labs folks have also been putting together various web applications that help to spread the information farther, such as a widget to put on your website or blog that uses keywords to offer actions related to the topic of the webpage (see left sidebar) and a Twitter “Social Actions PSA feed” you can have post to your own Twitter account daily for your favorite cause.

    So when fellow blogger Britt Bravo invited me, along with other nonprofit marketing bloggers, to help her help Social Actions to market and communicate its mission more effectively, I was happy to help. After looking over the website, here are some of my thoughts:

    • The focus needs to be centered on taking action — that’s what the mission is all about. But a look at the home page pulls me in many different directions. If I am a person wondering what I can do about my favorite cause, it should be obvious at a glance how to find that information. It took way too long for me to notice that the small search box at the top left that says “Find an action” is where I should start. The home page should be focused on the search box, with it being as easy to find as the box on Google’s search page.
    • Nowhere do I see anything about the specific issues I care about — just a lot about the features of Social Actions. The key to good marketing is looking at your product and communications from the viewpoint of your audience; answer their question “What’s in it for me?” They have made a good start, with using the words “you” and “your” in a couple of places, and providing a menu of options as “I would like to…” Show examples of featured issues and related actions. Let me see what your application does for me, rather than just talking about it.
    • The home page is also missing the heart and emotion of why people come in the first place. They are passionate about getting involved, in making a difference. They don’t necessarily care about “increasing the scope and impact of the citizen sector.” They want to save a life, rescue the planet, help someone out of poverty… and they want to do it in 5 minutes or less. Emphasize the impact they can have, the ease of participating, and the range of choices they can use to find an action that’s just right for them.
    • Even when I select the link that says “I would like to…Find ways to take action,” I am confronted with four text-based choices that are still not entirely clear for the person who is just looking for how to help stray cats. The language under the option “Find an action by location, cause or keyword” is far too techie for regular people: “Our mashup aggregates actionable opportunities from 19 social action platforms.” How about just “Find an action you can take for your favorite cause”? (And the number of social action platforms listed ranges anywhere from 19 to 30, depending on the page!)
    • Help your users continue to use and spread the word about Social Actions once they have been impressed by the range of action options for their cause. On every search results page, offer an easy-to-find RSS feed so that people can learn about the latest action related to their issue immediately. Offer the code to add a widget to their blog, Facebook profile, or MySpace page with actions on the cause for which they just searched. Add a link that says “Got Twitter?” with instructions on how to use the Social Actions Twitterfeed. Hand it to them rather than making them search your site for these tools.
    • And finally, focus on your mission and whom you are serving. Some of the options on the home page let you look at the nonprofit jobs and internships board, hire a nonprofit consultant, and help foundations develop a micro-philanthropy strategy. Social Actions seems to have a split personality, unsure whether it is serving the individual activist or the nonprofit sector. These two missions can coexist, but not on the same web page. There should be a separate site or section of the existing website for nonprofit professionals or it gets too confusing. Each group has very different communication needs.

    I hope that using the Social Actions website as a case study helps you look at your own website with a new eye. Do you have any other suggestions to help Social Actions?

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    Too Much Information?


    Knowledge is power. But a little knowledge can be a dangerous thing. I’m trying to reconcile these two ideas to decide whether learning my personal genetic code would do more good than harm.

    I read today about Google founder Sergei Brin’s discovery that he carries a genetic mutation that greatly increases his chances of developing Parkinson’s Disease. Brin’s wife, Anne Wojcicki, is the co-founder of a company, 23andMe, which offers personal genetic testing. For just $399 (which makes it well within reach for many people), the company will analyze a saliva sample to provide an in-depth report on how your genetics influence more than 80 diseases, health-related conditions and traits. You can learn what is encoded on your DNA and what it might mean for your current and future health.

    Do you want to know whether you are predisposed to have a heart attack or develop breast, colorectal, lung or prostate cancer? Are you destined to be bald? Have gallstones? Or live a long life? Would you live your life differently if you knew you did not have the heart attack gene? Maybe not be as motivated to exercise? Or if you were a smoker with the lung cancer gene, perhaps you would be more motivated to quit smoking?

    When we move away from the population-based risk generalities and to our own very specific DNA, I am not sure which way the psychology will lead most people. On the one hand, knowing which diseases are more likely to develop than others lets you focus on the health-related behavior changes that may get you the most bang for the buck. If you have the genes for venous thromboembolism, you can take precautions on long airplane rides and be more aware of symptoms that need prompt medical attention. Those with several of the nine genes related to Type 2 Diabetes can focus on losing weight and monitoring changes in their blood sugar over time.

    Along these lines, a recent study showed that patients with high cholesterol are more likely to be motivated to stay on their medication after seeing an actual scan of their own arteries showing blockage from plaque — kind of like the medical version of Scared Straight. The only way to get more personally relevant than seeing evidence in your own body of your risk for heart disease is to see what your genes have to say.

    On the other hand, the information people receive (and possibly misinterpret) about their genetic inheritance could lead to an unhealthy fatalism that prevents them from taking any action. If it’s written in their DNA, what can they do to stop it? Or the absence of a disease-related gene, such as for breast cancer (they test for 2 genes, but not the rare but high-risk mutations in the BRCA1 or BRCA2 genes), may lead to an unwarranted sense of invulnerability and the belief that mammograms are no longer necessary.

    Of course, biology is not destiny. But it might be hard not to take it as such if you learn that you are at high risk for developing a potentially fatal disease. You may live your whole life in dread, waiting for the other shoe to drop (that is a strange phrase, isn’t it?).

    I am reminded of something that happened to me, which illustrates the idea that a little knowledge can be a dangerous thing. Quite a few years ago, I was having back pain and so my doctor had an X-ray done of my back, along with an MRI. In addition to discovering that three of my vertebrae were fused in what was apparently a congenital condition, the MRI showed what the radiologist termed a “syrinx-like cavity” in my spinal cord. So of course I went online, looked up syrinxes and found that they can be a result of a degenerative disease called syringomyelia. It appeared that I would eventually suffer from things like motor impairment, muscle weakness, loss of sensitivity, and chronic pain. I and my family were devastated.

    I became an expert on the disease, identified the best course of treatment (surgical implantation of a shunt in the spinal cord) and found clinical trials I could sign up for. Because this is a fairly rare disease, my regular physician and the specialists I consulted with did not have much more to tell me than what I could find myself. The fact that I was asymptomatic was a good thing, but symptoms can come suddenly, triggered by coughing or straining that puts pressure on the cerebrospinal fluid.

    I was lucky that one of the world’s experts on syringomyelia was based at UCLA, and after what seemed like a very long time, I was able to get a consultation with him. He took one look at my MRI and said that I did not have syringomyelia. The syrinx was just a vestige of a congenital blip in the development of my spinal cord, and would likely never cause me any problem. And just like that, the random discovery of this anomaly that had turned my life upside down no longer meant anything. False positives are always an issue, as they are with technologies like full-body CT scans that are fishing expeditions for evidence of disease.

    As more and more people decide to delve into their genetic endowment, like those at the “spit parties” hosted by 23andMe, ethical issues are bound to pop up. I don’t think we’ll ever have Gattaca-like genetic discrimination, but what happens if insurance companies decide they need to have a look-see at our DNA before they agree to cover us? Genetic testing already plays a prominent role early on in the dating process in some Orthodox Jewish communities, with both parties getting tested and checked against each other to see if they are genetically compatible (i.e., not both carriers of genes for genetic diseases more common among Ashkenazic Jews). Potential couples who may otherwise be perfect for each other may never get together because of that 25% chance of having a baby with a disease like Tay-Sachs or Cystic Fibrosis.

    So, what do you think? Do you plan to have yourself and your family tested? Would knowing your genetic code motivate you to take action? Or are there just some things you would be better off not knowing?

    Photo Credit: MASH DnArt

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