A couple weeks ago I participated on a panel in Richmond, Virginia to give a “contrarian’s” view of health care and social media. The event was hosted by the kind people at the Social Media Club Richmond: on Facebook and Twitter.
As the costs of sequencing our DNA shrink and as the roles of digital media in our lives expand, we will need to understand who (or what) controls the ownership, access and use of own genomic information. From state regulation to Google to Facebook, who controls the acquisition, transmission and replication of our genomic information and material will become an important battle in the 21st Century. The purpose of this post is to highlight new connections which genomics and digital media make and to raise important questions about the most potent substance in our lives: our DNA.
23 CHROMOSOMES AND PERSONAL KNOWLEDGE
Last week, in celebration of DNA day, the personal genomics company 23andme offered a sizable discount for its complete edition kit. The information provided to consumers is extensive. With the kit, the company promises access to the following kinds of data and information:
- Ancestry information – relative finder, maternal lines
- Healthcare – Disease risk, carrier status, drug response, traits
- Raw genetic data
Genetics has always been a bit of passion for me – at one point in my kaleidoscopic career I even considered getting into genetic counseling. I’ve long considered purchasing such a kit and given the opportunity I decided to go for it. I spread the word to a few of my friends and mentioned it through the meme-machine that is Twitter.
In the course of some of the tweeting about the genetic test, however, I discovered that a friend of mine couldn’t order the kit because she lives in Maryland. This one restriction brought up several issues related to our acquisition (and distribution) of our genomic information:
- Should genomic services be permitted to be marketed DTC (direct-to-consumer) or require prescriber involvement?
- Should there be a mandatory gatekeeping function like genetic counseling between consumers and their genomic data?
- What happens to the information? How far will it travel?
- Where is the data stored and who controls access?
- How will the data be used? How will pharmaceutical and biomedical companies or government agencies access and use our genes and the information and promises they contain?
- What rights do consumers have to access and use? Do consumers have property and royalty rights to their DNA?
- What happens when consumer DNA is publicly searchable? Will we be able to Google our DNA?
- Will our genomic data become part of our social profiles and metadata on platforms like Facebook?
- What are the core ethical, legal and cultural issues and consequences inherent in genomics? More importantly: will our public discussion be informed and civil and open-minded?
- Is your DNA ReTweetable? (More on that in a bit.)
As you can see, control of our genomic information is one of the central issues confronting us. It’s not far-fetched to conceive our genomic information as a controlled substance – but in what regards?: as a subject of state and federal regulations? as a private right of personalized medicine? as a communal property of the human race?
These are just some of the questions which genetic information raises. There may not be right or wrong answers to these questions per se: so much depends on our values, beliefs, ethics, knowledge and passions.
So let’s take a look at the issues which the technology of genomics presents before us.
NONE SHALL PASS
Our genes give us life. They pigment our skin and eyes, determine if we can roll our tongues, and even influence our behaviors. Of course gene-environment interrelationships are complex – and the deterministic powers of our genes can range from weak to strong: not everything that is determined to happen actually happens. Still, our genes influence us in ways which are still being elucidated by geneticists, neurobiologists, and other life and other scientists.
Genes also carry diseases and they contain information about our bodies. How we interpret what genomics (and proteomics) reveal about ourselves can be more complex than appears on the surface. Thus arises the question concerning the balancing of personal rights with larger social responsibilities.
If you need a medical doctor to diagnose a medical condition (a form of access to information about your own body), does it stand to reason that you need permission from a medical doctor or other provider in order to gain access to your own genetic information?
The State of Maryland and many other states appear to think so and do not permit DTC marketing of genetic-tests.
As you can see, the emerging battles over access to our genomic data already raise a bunch of issues. On the surface it may appear to be a simple matter of big government asserting its parental powers over citizens’ ability to make decisions. But the arguments for or against DTC banning aren’t necessarily easily dismissed because the deeper issues may give rise to multiple layers of public health safety, including:
- Do consumers need the interpretive expertise and guidance of genetic counselors and other professionals?
- What happens if the quality of the results contain material errors?
- What responsibilities do genetics-testing companies have to consumers?
- What are the dangers to consumers of having direct access to their raw genomic data?
- What are the benefits to consumers of having direct access to their raw genomic data?
- What are the dangers of and legalities of state or federal regulation of how consumers can access their genomic information?
- Do we need a new way to balance the rights of consumers with the need for professional expertise?
- What processes and regulations may be needed to ensure informed consent and privacy?
The public discussion about these and other discussions need to be balanced and considerate of opposing views. Why? Because the process of attempting to answer these and other questions can often provide more value than the answers themselves.
When it comes to the issue of regulation – wherever you are on the spectrum between Libertarianism and Communism – minds reasoning together will need to consider the breadth and depth of considerations. Is strict regulation necessary or effective? Or will a free market of ideas and money result in the optimal state?
Perhaps we will need a new way of defining what’s equitable when striking the balance of multiple interests.
But not only do we have to address the above questions in their own light, we now have to take into account the roles emerging digital media play – our DNA will soon become a part of our social profiles, making the need for discussing these issues even more urgent.
Let’s find out why.
THE BOLDEST MISSION
“Google’s mission is to organize the world’s information and make it universally accessible and useful.” – Google’s Mission Statement
Perhaps the boldest and most ingenious mission statement of any company in the short history of Capitalism is Google’s. On the surface it appears grandiose but limited in scope. But Google’s mission statement is neither metaphorical nor narrow: it is practical and wide. Not a single word in their mission statement is unnecessary: each one collaborates with the other to form a grand strategic and profitable vision the world’s decision-making and behaviors.
Information and data are everywhere. And nowhere in our human experience is data more important than within the tiny helical molecule that forms the template for our biology. DNA is a part of the world’s information.
Where might Google come in here? Google holds a minority interest in 23andme, Inc. It stands to reason, then, that Google has its eyes on our genomic information.
Google clearly has an interest in genetic databases – for good or ill – and as an organizer of the “world’s information” it has the potential of becoming a major player and intermediary in the business of genomics. Whether or not Google ultimately acquires 23andme or some other similar service remains to be seen. In fact, it may not have to: strategic partnerships may effect the same kinds of results as an acquisition.
I don’t know if Google would actually index the world’s genomic information. But with respect to an informational Juggernaut like Google, how would it organize such information and make it “universally accessible and useful”?
Moreover, what would the wider consequences of such an organization of genomic information have on our online social lives?
THE WEB OF DIGITAL LIFE
Which brings us to the matter of how our genomic information figures into our increasingly connected social web. As the number of people who regularly use social software like Facebook or Twitter or whatever new media arise, how much of our genetic identities will be involved? In addition to sharing our pictures and experiences, will we share information or metadata about our genes?
We have recently seen the willingness of people to use location-based services to tell the world where they are – a practice which only a few years ago seemed unilikely to be embraced by most people. Similarly, will we see the emergence of gene-based or snp-based social services? Will our Facebook profiles offer the option of uploading our DNA sequences or snips of them?
Could such sharing enable healthcare community-building for people with similar medical conditions? Might it enable us to connect in entirely new ways and strip away the idea that we connect with “strangers” and replace it with the idea that every stranger is in fact a relative? Esther Dyson (a member of 23andme’s Board of Directors) and Anjali Joshi (Director of Product Management at Google) shared some thoughts about similar questions:
And beyond just the major social networks, how might APIs be used to connect and transmit genomic information and social profiles and other kinds of resources? Bear in mind that the Web is evolving – it won’t always be limited to just web browsers and search engines and today’s social media sites: the inter-linking of applications will expand the Web way beyond its current universe.
As the Web becomes a center-less center of our daily lives, how will all this convergence of polynomial information influence our cultures, our values, our perceptions of ourselves?
THE GENETIC RETWEET: OR HOW RNA WAS THE FIRST TWITTER CLIENT
Replication. Without it, we wouldn’t be here. The first self-replicating molecule was a momentous arrival on our planet. The ability to copy information and re-transmit it are key mechanisms in living systems. Replication and transmission are also key mechanisms in cultures.
Which brings us to Twitter and the virulence of ideas. One could describe – at least amusingly – the first self-copying of a molecule as the original ReTweet, and that RNA was one of the first Twitter clients. How is DNA shared from one generation to generation? It’s ReTweeted! 🙂
Twitter is a meme-machine: it copies and mutates ideas and news and all sorts of information and data – useful or otherwise. And when we think about emerging media with regard to the transmission, replication and mutation of our ideas and identities, how about our genes?
How will the ability to instantly and globally share our genomic information anytime and anywhere to anyone and anything influence the kind of world we live in? It’s difficult to even imagine what kinds of sharing and for what purposes this kind of sharing might evolve. Will such sharing lead to more or less cultural (or even genetic) variety? Will it help to erode racial prejudices or reinforce them? Will it give us more or less control over all aspects of our lives?
How will we handle our most important substance? How will we look upon it and reflect on its powers to change the world? Whom – or what – might we become?
REFLECTING ON OUR GENE POOL
The title of my post was a question: Is your genome a controlled substance? At first glance, it seemed to be about government control or perhaps corporate control of our genomic information. But as you can see, it’s a question that begets even more questions – not unlike the evolving and unfurling of DNA itself.
And although we think that the answer to that question must involve people or regulatory agencies, perhaps one day we may find out that it isn’t any of us who controls the substance of life. Governments, corporations, individuals, groups – all may indeed have their own particular control mechanisms.
And yet the key ingredient in all evolutionary systems – especially those via natural selection – remains the unpredictable random event. The more control you exert over such a system, the more likely you are to lose control entirely – and you may even lose your mind fighting to assert control over something beyond your control.
The story transcribed out of our DNA echoes far beyond ourselves.
Like it or not, we all have a stake in how the questions I’ve raised get answered. Life is strife – and so it will be with our struggle to protect our individual and collective rights with genomic powers. This moral, ethical, legal, cultural, emotional and social struggle is not just about self-preservation: it’s about the future of a species which created Civilization – which is itself a technology for controlling memetic evolution.
We now have ever-evolving social software which create new ways to gather and share and connect. As the technologies which enable us to access our own genomic information make it easier for us to share that information, the matter of how and what we share – and who or what controls the sharing and within what contexts and processes – creates a new kind of bio-cultural pool into which we can dip.
Our genes gave us our brains and thumbs. In turn, our brains and thumbs gave us the very lenses through which we can peer into our pool of genes. As we gaze into that pool of genesis, we aught to recall the tale of Narcissus and the price we pay for staring too long at our own reflection.
I’m not a fan of buzzwords: not only do they tire with time but they also constrict discussion and usually end up being the object of unimaginative and disconnected marketing efforts. In recent years, we have seen the emergence of the ePatient. And sure enough, we can now see that the term is beginning to be usurped by marketers. Of course, the ethics and effectiveness of that kind of marketing depends on the quality of execution.
SAY HELLO TO THE fPATIENT
A new service – which I won’t give direct attention-traction to by linking to its website here – promises to deliver revenues to healthcare organizations wishing to market to so-called ePatients. This service employs the use of a fictive patient named Sara Baker who even has a fictive Facebook profile. The bio on her profile (Page actually) discloses that she isn’t real but “represents healthcare consumers like you and me”. She is an fPatient.
Is that ethical? Is it an acceptable marketing practice to build a fake composite social object in order to facilitate the push for a product or service? There are differing opinions on that – some of which were raised on the weekly healthcare social media Twitter chat hcsm.
In my opinion, I think that the ethical standards for marketing healthcare ideas and products and services must be above board. Why? Because healthcare is a continuum, a stream, and when one part of the industry is tainted by fakery – no matter how seemingly insignificant – there’s always the chance that such fakery can leach into the stream.
One could argue that faux patients have been heavily used in traditional marketing: from billboard ads to television commercials. We perhaps can understand that kind of use given the limited nature of traditional media.
But when it comes to emerging media, especially the kind that allows conversation, it becomes critical that those conversations are honest and sincere and free of sham. That’s the key difference here: Sara isn’t conversing with consumers (someone else or some thing is) – and in spite of the tiny disclosure in her profile, there’s nothing in her stream to indicate that she’s not real – other than the fact that her status updates are droll and mechanical.
MARKETING MEDIOCRITY AND CREATIVE ANEMIA
Which raises another question: Is the deployment of fake profiles in Healthcare Marketing even necessary? Marketing not only has to be effective, it also has to be respectable. Why create a fake social object when so much more social capital can be built by simply being honest and truthful and direct? Why not take advantage of direct interaction and feedback?
Marketing in the 21st Century is evolving. The properties of emerging media are different from the properties of the unilateral mass communications media of TV, print and radio. Marketers who fail to understand those differences and invest in the time and resources to acquire the skills and proficiency for remarkable healthcare communications will eventually suffer a creative anemia.
Sara Baker can fool some people and maybe she’ll help her creators deliver some revenues to their clients. But she’s a mediocre and fake substitute for the hard work required to be remarkable in healthcare communications.
Healthcare Marketers: if you want to have a well-paying career in ten years, know that the cost of Dreck is rising. Fakery is Dreck. In today’s world, Dreck isn’t just bad copy or ugly creative design: it’s in poor social design and mediocrity of voice. Do you honestly want your name associated with Dreck?
You can debate and justify the ethics of using the fPatient ad nauseum but you’re better off investing your time in becoming fluent and proficient in conversational media. Otherwise, forget about social media. You still have some time left to benefit from traditional marketing: most of your customers probably aren’t using social media that much right now anyway. But time is running out.
THERE IS NO SUCH THING AS AN ePATIENT
The fPatient raises one final point here about labels and it’s very pertinent to the fPatient marketing.
It’s convenient to have a simple label to convey a message and make distinctions. When it comes to health care, however, language matters because how we use words influences how we think and feel and behave.
Let’s take two sentences to illustrate:
- “Tom is a schizophrenic.”
- “Tom has schizophrenia.”
By referring to Tom as a schizophrenic, his disorder is overlayed on his person. But Tom is a human being who happens to have a brain disorder. Tom isn’t his disorder. Such labeling can potentially influence how providers and others interact with him.
But by saying that Tom has schizophrenia, we are clearer in our language and aren’t confusing Tom with his disorder. Make sense?
So let’s extend this reasoning to ePatient. By referring to patients as ePatients, we encounter a similar problem of confusing the person with an aspect of their behavior.
When we say “Tom is an ePatient” what does that mean to a nurse or a doctor? If Sally is also an ePatient, does that mean a nurse should treat Tom and Sally the same with regard to their ePatiency (how’s that for a neologism)?
For when it comes to Tom’s and Sally’s use of online media and the way they speak for themselves, they can have different empowerment styles:
- “Tom uses various social media to acquire health care information and communicate with his providers.”
- “Sally scours PubMed for her healthcare information, prefers to communicate face-to-face with her providers and actively participates in online diabetes forums.”
That added layer of information is more useful to a provider: she has a better understanding of her patient’s behaviors.
How much value is there in telling a nurse or a doctor that Tom and Sally are ePatients? Perhaps some. But ultimately, providers need to know the specific and relevant characteristics of their patients. A general label probably doesn’t help much.
I’m glad that there are movements like the ePatient movement to raise awareness of the need for empowering patients. Patient empowerment is vital to health care. Responsible providers understand this.
But if words become objects in themselves and result in a new filing system, then they lose their value. Healthcare Marketers need to understand this.
As I said earlier: Marketing not only has to be effective: it has to be respectable.
When it comes to healthcare communications and marketing, anything less than professionalism and excellence and clarity is Dreck. Not only is it Dreck, it can be harmful: the farther away healthcare communicators are from patients, the easier it is to lose sight of the impact of their messages.
Language matters – no less in health care. Usurping words just because they’re in style may have some effect but in the long-run, marketing and communications require innovation and creativity, clarity and honesty.
Too often, Marketers opt for what appears to be the easy road. But in a world where people can talk back and retweet and take snapshots of your work, going down the easy road may turn out to be a nightmare journey.
If you use fakery to get your message out, don’t be surprised if your message gets drowned out by the sound of your competitor’s fans who adore and respect the real patients who love their products and services.
Let’s hear your thoughts!
Note: upcoming post will be on the uPatient: the Unempowered Patient. We need to have that conversation: there are more unempowered than empowered people in the world.
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- Fake Facebook profiles and other portents of the end times (healthblawg.typepad.com)