Who Should Get The Benefits When You Donate Your DNA For Research?

from the tales-from-the-Blue-Zone dept

A few weeks back, we wrote about researchers calling for up to five years' exclusivity for clinical trial data derived from volunteers. That kind of information, typically derived from trials of a new drug, tends to be highly specific. But there's another kind which can potentially contain millions of valuable data points. In fact, the genetic information contained within every strand of DNA can not only provide important insights into countless diseases and medical conditions, but is the closest thing that exists to a digital summary of the person it comes from.

Because of that unique ability to store key data about people, collections of DNA have become a hugely important scientific resource. And because DNA is so intimately bound up with a single, identifiable individual, they naturally feel a very strong connection to that digital string and how it is used. Both of those traits are evident in this fascinating story from the Guardian about Sardinia's "Blue Zone" with its unexpectedly long-lived inhabitants:

The story starts nearly 20 years ago when Gianni Pes, a Sardinian scientist at Sassari University, visited nearly all of Sardinia’s 377 municipalities to try to prove that certain areas had an unusually large number of people who lived extremely long lives. When they found a town that met their criteria, they marked it on their map with a blue marker. When they were done, the Sardinian Blue Zone was established.
Naturally, scientists are keen to understand whether there is some genetic characteristic shared by these exceptional individuals:
In all, four databases of DNA samples have been collected over the years, with some researchers refusing to collaborate with others.
That hints at the deepening bitterness that has engulfed this area of research, as two groups claim the right to investigate one of the region's DNA databases:
One of them was Shardna, created by a scientist called Mario Pirastu. Another entity, a partly publicly funded group called Parco Genetico, was established at the same time to facilitate the data collection and act as an intermediary between Shardna and the Blue Zone towns. Now the two groups both claim rights to the database.
It's a complicated tale, with many murky corners, and it's worth reading the whole Guardian feature to follow its twists and turns as various companies go bankrupt, and the precious database containing blood samples from 13,000 Blue Zone inhabitants keeps changing hands. But as the Guardian rightly points out, the real issue is not which outfit should get to own the database, but the following:
The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated?
Needless to say, lawyers are now involved in resolving the more mundane issues of ownership of the Blue Zone blood samples. But even if a court hands down its judgment for this particular case, the larger ethical issues will remain, and become ever-more pressing as the importance and value of DNA databases continues to rise.

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  • identicon
    Anonymous Coward, 17 Aug 2016 @ 12:33am

    Maybe there should be something in this field like there's things like CC for others. You have the option to specify that you're donating your DNA and any scientific research group could use it and come to their own findings but can't claim ownership over the DNA or DNA database itself to keep others from doing their own research. The groups would still be able to profit off of their findings if they actually find something useful in their research.

    reply to this | link to this | view in chronology ]

    • identicon
      David, 17 Aug 2016 @ 2:22am

      Re:

      Look, that all sounds very nice. But any single thing relying an a majority or even a significant minority of well-informed and determined conscientious citizens is not going to take off.

      I mean, look how much effort it takes even to convince a sufficient number of people not to vote the most power-greedy morons into political office and you'll understand that relying on good sense in sufficient numbers on smaller-scale issues just is not going to work.

      This kind of crap can and will not be addressed by grassroot efforts.

      reply to this | link to this | view in chronology ]

      • identicon
        Anonymous Coward, 17 Aug 2016 @ 3:06am

        Re: Re:

        Developing and publicizing such a CC-type contract would the first step to getting it to be the standard. But there's no reason why that project would be limited to grass-roots efforts. It could also become a requirement of public funding agencies, just as national science funding has started getting tied to open access for research articles that are produced.

        reply to this | link to this | view in chronology ]

  • identicon
    David, 17 Aug 2016 @ 1:03am

    The marvels of culture

    The roots of culture lay in oral tradition. Things like the Iliad and Odyssee and wagonloads of odes and epics where preserved by people dedicated to learn them by heart and pass them on to whoever was open to them.

    Knowledge and its dissemination is what puts humans far beyond other animals (the overlauded use of tools very much benefits from knowledge dissemination, and primitive tools are used by a number of primates and even birds in actually inventive manners).

    Knowledge does not diminuish by passing it on. It makes no sense to tie it down with greed but yet that is exactly what our societal orders dancing around the golden "property" concept are trying to do even with the so-called "intellectual property".

    In the gospel, Jesus is said to state that sooner will a camel walk through the eye of a needle than a rich man get into heaven.

    Our whole societal order is a "rich man" and the weapons and wars it uses to secure its standing are not exactly heaven's work.

    Can we really do no better than that?

    reply to this | link to this | view in chronology ]

  • identicon
    Daydream, 17 Aug 2016 @ 2:10am

    Everything is connected.

    Think about how many people use petrol every day. Think about how many wear clothes they purchased from a retailer. Think about the food everyone eats and where it comes from.

    Think about how many times you go to the doctor in a year, then consider how many little discoveries, tiny breakthroughs in the grand scheme of things, came together to create the modern medicine and practices you benefit from today.
    Then, think about how communications and transportation have evolved to let knowledge of those discoveries spread about the world, and how the evolution of agriculture, architecture and industry, have let humans thrive and actually use those discoveries.

    Everything is connected. Absolutely everything.
    Sometimes in ways that seem insignificant, until they rear up and surprise you in unexpected ways.

    When you donate your DNA for research purposes, the question of 'who will benefit?' is a meaningless one.
    Because in the end, either all people on earth will benefit from your gift, or some idiot will debase your offering, in order to create for themselves an illusion of power and self-enrichment.

    The real question you should be asking, isn't 'who will benefit?', but, 'who can bear the weight of this responsibility?'.

    (I'm sorry if this has absolutely nothing to do with the above post; I saw the title, I've been reading about sustainability, and I had an urge to wax philosophy.)

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 17 Aug 2016 @ 5:31am

    GPL vs BSD all over again.

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 17 Aug 2016 @ 6:05am

    "Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated?"

    Yes. Yes they should, as long as that genetic information has been put into a public database accessible by all private and public entities.

    Money is a driving motive for both business and academia. Let the database spur both consumer products/healthcare innovation and publishable research.

    Right now the business model is trending towards making the database itself the product. I can't help but suspect part of this derives from the copyright/somebody-has-to-own-it extremist attitude/mindset that is regularly reported on by Techdirt.

    reply to this | link to this | view in chronology ]

    • identicon
      Anonymous Coward, 17 Aug 2016 @ 6:31am

      Re:

      "Money is a driving motive for both business and academia."

      And here I thought academia was devoted to the search for knowledge - silly me, no wonder I do not understand many decisions made by our esteemed collegiate leaders.

      Supposedly, one is not allowed patent, copyright or trademark upon nature, math, and many other things but that will not stop people from their scams trying to convince others about what they "own".

      reply to this | link to this | view in chronology ]

      • identicon
        Anonymous Coward, 17 Aug 2016 @ 11:57am

        Re: Re:

        Academia is devoted to the search for knowledge, but who is going to pay for it? Science is expensive, even when you can get things at cost.

        And you can't just take up space indefinitely at a university (w/o tenure that is) without producing something of merit(i.e. "publish or perish"), nor without being able to bring in grant money either through the government or private organizations.

        Yes, there is no "profit" gained or sought in academia, but if nobody is willing to pay for you to do your research (and fund the vast majority of it), then you don't get to do that research. The new associate professor in my department at my university is trying to set up his lab, and is spending about $250,000 on equipment and materials to just get his research project started, and has a year to produce something(he won't even be teaching classes) before the school decides whether he will continue to be employed or not. That money has to come from somewhere. You and I both may not like that, but this is how the system works at the moment.

        reply to this | link to this | view in chronology ]

  • icon
    Mason Wheeler (profile), 17 Aug 2016 @ 7:03am

    Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated?

    Yes.

    Should they be able to claim some right to profit exclusively from it?

    No way no how.

    reply to this | link to this | view in chronology ]

  • identicon
    Doug D, 17 Aug 2016 @ 9:03am

    Let me decide.

    I just want to make sure such entities disclose exactly how my DNA data will be used and will be compelled not to pull a bait-and-switch by changing the terms in their favor after they have the data.

    Then, let me decide whether my data can be used by any given company.

    (This is easy as long as each individual's donation is done separately, but problematic if large databases are built first and passed around later.)

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 17 Aug 2016 @ 6:54pm

    Ethics in law went down the drain when the law started extending and expanding copy protection laws at the hands of corporations well beyond reason, retroactively even.

    The law does not care for ethics. Only for self preservation and for the interests of lawmakers and those that pay for those laws.

    reply to this | link to this | view in chronology ]

  • identicon
    Michael, 7 Oct 2016 @ 12:33pm

    Hello, well i think that the benefits of sequencing are likely to be connected, complex, and largely unknowable until years have passed and the consequences are examined across several generations.

    However, thinking through the issues surrounding personal genomics now, rather than later, may help to avoid potential pitfalls and ensure that the good outweighs the bad.

    reply to this | link to this | view in chronology ]


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