Do You Own Your Genome?
As the costs of sequencing our DNA shrink and the roles of digital media in our lives expand, we will need to understand who (or what) controls the ownership, access and use of our 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,
- and raw genetic data.
You can learn more about what the company does here. Competing companies offering similar services include: Navigenics, FamilyTreeDNA and Complete Genomics.
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 centerless 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.
*This blog post was originally published at Phil Baumann*
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