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Opinion: Occupy Science?

Biomedical research can learn from citizen science, which is grounded in strong relationships with study participants.

By | January 24, 2012

ISTOCK, SJLOCKE

Genomics research increasingly depends on access to large pools of individuals’ genetic and health data, but there is mounting dissatisfaction with governance approaches that erect barriers between donors and the biomedical research in which they are participating. Typically, participants have little or no opportunity to track how their data are being used, what discoveries result, and what the new knowledge might mean for them, even when findings are of life and death significance for the participant.

Some frustrated communities have built their own scientific enterprises outside of traditional research settings.  Disease advocacy organizations have established biobanks, for example, and firms like 23andMe and PatientsLikeMe have used crowdsourcing methods to build up repositories of genomic and health data, each attracting over 100,000 participants in just a few years. Often labeled “citizen science,” these projects offer a two-way connection between participants and research—participants contribute their data, while seeing how it is used in research, what findings it generates, and how that new knowledge might impact their own lives.

Such citizen science efforts have also begun to achieve something that is crucial to the future of personalized, or “precision,” medicine.  A cornerstone of such medicine, according to a 2011 National Research Council (NRC) report, is a dense “knowledge network” (i.e., biobank), built by “mining” genomic, phenotypic, health, behavioral, and environmental data from many people. Indeed, former National Cancer Institute director John Neiderhuber has predicted a near future in which “every citizen” will contribute biosamples to biobanks and funnel health data into a centralized databank via biosensors linked to smartphones.

Yet, few will submit to being “mined” in this way.  The NRC report notes that to realize such a vision, there must be a “gradual elimination of institutional, cultural, and regulatory barriers to widespread sharing of the molecular profiles and health histories of individuals.” But this emphasis on overcoming barriers neglects that such a knowledge network is necessarily also a social network, a network that connects people, whether they are the people who experience disease or the people who study it.  The robustness of the knowledge network will depend on social connections—on the relationships, rules, and forms of trust that hold it together.  Far from “barriers” to be removed, these are connections that must be built.

This has been well demonstrated by some citizen science projects, which stand or fall on the strength of the social networks that underlie them.  Though far from perfect, these projects begin to sketch the outlines of an altered social contract between science and society—one that is open, participatory, and dependent on the collective energy of the community.

A key barrier to forging similar relationships in mainstream research is the dominant approach to informed consent.  The consent process tends to treat participants as outsiders to the projects that depend on them.  Signing the form is often the first and last interaction between participants and the research enterprise. These practices engender exceptionally weak social connections between donors and research: the focus is on mining information, not forging relationships.

Some have proposed that the ethical rules governing biobanking should encourage broad consent—or eliminate the need for it altogether.  A better solution lies in the opposite direction.  Mainstream research should invite forms of participation that treat donors as citizens committed to achieving a public good, not as repositories of informatic gold, ripe for mining.  Thanks to continually evolving network technology, participants could easily remain connected to research, electing personalized privacy protections or providing additional study-specific data upon the researchers’ request via flexible web-portals.  Such a system would recognize the right and the competency of participants who have given material from their bodies to govern that material’s future uses.  It would give participants a means to do more than the minimum, and the authority to say no when research goals do not comport with their values or preferences.

By seeing how their contributions are used, participants would gain a window into knowledge-in-progress, opening the black box of research to reveal just how far there is to go, and that getting there depends on a collective effort.  It would also offer a more dynamic—and more honest—picture of science, balancing hope with realism.  It would clarify the essential roles (and responsibilities) of scientists, patients, and research participants in advancing science.  It would move beyond a model that treats the asymmetry in expertise between scientists and citizens as a justification for asymmetry in research governance.  And it would build public trust in science by entrusting the public with a central role in shaping the future of biomedical research.

Science and citizens should not occupy separate worlds: by strengthening the role of citizens in science, science too will be strengthened.

Krishanu Saha is a Society in Science postdoctoral fellow at the Program on Science, Technology and Society, Harvard Kennedy School, and stem cell biologist at the Whitehead Institute for Biomedical Research, Massachusetts Institute of Technology. J. Benjamin Hurlbut is an assistant professor at the School of Life Sciences, Arizona State University.

Read more about their thoughts on how to treat biobank donors in their recent commentary in Nature.

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Comments

Avatar of: geneager

geneager

Posts: 3

January 24, 2012

Sage Bionetworks is creating an open access system just as you describe that will include individual contributions of data, http://sagebase.org/WP/com/?pa.... Innovative informed consent model included.

Avatar of:

Posts: 0

January 24, 2012

Sage Bionetworks is creating an open access system just as you describe that will include individual contributions of data, http://sagebase.org/WP/com/?pa.... Innovative informed consent model included.

Avatar of:

Posts: 0

January 24, 2012

Sage Bionetworks is creating an open access system just as you describe that will include individual contributions of data, http://sagebase.org/WP/com/?pa.... Innovative informed consent model included.

Avatar of:

Posts: 0

January 25, 2012

It's extremely unlikely that people will agree to participate in these efforts in a health care landscape that's dominated by insurance companies and lawyers. They can see erosion of their ability to get access to quality health care, disregard for the problems of elderly patients, and a steady increase in the fraction of the GNP we spend on medicine and health. The system in the United States is broken, and citizens would be foolish to risk having their genetic data fall into the hands of for-profit insurance companies. 

Avatar of:

Posts: 0

January 25, 2012

It's extremely unlikely that people will agree to participate in these efforts in a health care landscape that's dominated by insurance companies and lawyers. They can see erosion of their ability to get access to quality health care, disregard for the problems of elderly patients, and a steady increase in the fraction of the GNP we spend on medicine and health. The system in the United States is broken, and citizens would be foolish to risk having their genetic data fall into the hands of for-profit insurance companies. 

Avatar of: cborgia

cborgia

Posts: 1457

January 25, 2012

It's extremely unlikely that people will agree to participate in these efforts in a health care landscape that's dominated by insurance companies and lawyers. They can see erosion of their ability to get access to quality health care, disregard for the problems of elderly patients, and a steady increase in the fraction of the GNP we spend on medicine and health. The system in the United States is broken, and citizens would be foolish to risk having their genetic data fall into the hands of for-profit insurance companies. 

Avatar of: david.harrison

david.harrison

Posts: 28

January 26, 2012

As a researcher, I would be delighted to have pools of patients that volunteer to work with me directly, in exchange for being kept up on my results.  However researchers want to make useable discoveries, and thus would need to be protected from greedy lawyers and heirs.

Avatar of: Dr. Susan Love

Dr. Susan Love

Posts: 1457

January 26, 2012

The real barrier is not the public but the medical establishment who control access, data and samples.  By disintermediating them and going directly to the public we can indeed open up scientific research.  The Love Avon Army of Women (www.armyofwomen.org)  is an email list of over 360,000 women (70% without breast cancer and 30% survivors) who are interested in participating in research looking for the cause of breast cancer.  They have eagerly participated in over 57 studies throughout the US involving everything from online questionnaires to core breast biopsies of healthy women and genetic studies. The important issue, however, is that these be partnerships ie participants are part of determining what issues should be studied or have clinical importance.  As we prepare to launch the first totally online cohort study, the Health of Women, in early summer, we will be soliciting the women as well as the scientists for the questions we need to ask. 

Avatar of: mem_somerville

mem_somerville

Posts: 1457

January 26, 2012

This completely ignores the risks of social networks. PatientsLikeMe data was once known to be scraped by intruders. And that's one that we know publicly--who knows if there have been or will be other incidents. There's little legal protection beyond the labs for people. GINA is great, but limited--and unless there are more legal barriers to misuse of the information, I'd be reluctant to participate and I wouldn't advise my family to do so.

Avatar of: Sharon F. Terry

Sharon F. Terry

Posts: 1457

January 26, 2012

Genetic Alliance Registry and BioBank has tens of thousands of contributors - all lay owned and managed - http://www.biobank.org, and with proper privacy protections (we have our own IRB), we find individuals ready and willing to contribute.  With Sage Bionetworks (see previous post), we are working on building a commons to provide infrastructure for data sharing on a large scale.

Avatar of: Svetlana Soldatova

Svetlana Soldatova

Posts: 1457

January 26, 2012

Science has always been done by ordinary "people". Louis Armstrong was once asked "is jazz just a folk music?" He replied ""well I ain't seen no horses playing it !". The question is what role do intelligent people who work outside of the scientific establishment have within the sciences? History answers: "everything". Major paradigm shifts were completed by Einstein (a patent clerk) Mendel (a monk) and Darwin (an amateur collector).

Science is empirically applied reason; anyone can (and do) do it but only when they follow the scientific method.  I may add that the rise, rise of of non falsifiable mathematical modeling within our Post Modern society has led to model misuse within the scientific establishment (as well within the arts and economics). As an amateur evolutionary theorist I have documented ongoing model misuse within Neo Darwinism which has been completely taken over by Haldane and Hamilton's mathematics (Hamilton's Rule rb>c for the evolution of an altruistic in fitness trait). Hamilton's Model cannot be empirically falsified just non verified simply because no algebraic constant was included.

John Edser

sci.bio.evolution

Avatar of:

Posts: 0

January 26, 2012

As a researcher, I would be delighted to have pools of patients that volunteer to work with me directly, in exchange for being kept up on my results.  However researchers want to make useable discoveries, and thus would need to be protected from greedy lawyers and heirs.

Avatar of:

Posts: 0

January 26, 2012

The real barrier is not the public but the medical establishment who control access, data and samples.  By disintermediating them and going directly to the public we can indeed open up scientific research.  The Love Avon Army of Women (www.armyofwomen.org)  is an email list of over 360,000 women (70% without breast cancer and 30% survivors) who are interested in participating in research looking for the cause of breast cancer.  They have eagerly participated in over 57 studies throughout the US involving everything from online questionnaires to core breast biopsies of healthy women and genetic studies. The important issue, however, is that these be partnerships ie participants are part of determining what issues should be studied or have clinical importance.  As we prepare to launch the first totally online cohort study, the Health of Women, in early summer, we will be soliciting the women as well as the scientists for the questions we need to ask. 

Avatar of:

Posts: 0

January 26, 2012

This completely ignores the risks of social networks. PatientsLikeMe data was once known to be scraped by intruders. And that's one that we know publicly--who knows if there have been or will be other incidents. There's little legal protection beyond the labs for people. GINA is great, but limited--and unless there are more legal barriers to misuse of the information, I'd be reluctant to participate and I wouldn't advise my family to do so.

Avatar of:

Posts: 0

January 26, 2012

Genetic Alliance Registry and BioBank has tens of thousands of contributors - all lay owned and managed - http://www.biobank.org, and with proper privacy protections (we have our own IRB), we find individuals ready and willing to contribute.  With Sage Bionetworks (see previous post), we are working on building a commons to provide infrastructure for data sharing on a large scale.

Avatar of:

Posts: 0

January 26, 2012

Science has always been done by ordinary "people". Louis Armstrong was once asked "is jazz just a folk music?" He replied ""well I ain't seen no horses playing it !". The question is what role do intelligent people who work outside of the scientific establishment have within the sciences? History answers: "everything". Major paradigm shifts were completed by Einstein (a patent clerk) Mendel (a monk) and Darwin (an amateur collector).

Science is empirically applied reason; anyone can (and do) do it but only when they follow the scientific method.  I may add that the rise, rise of of non falsifiable mathematical modeling within our Post Modern society has led to model misuse within the scientific establishment (as well within the arts and economics). As an amateur evolutionary theorist I have documented ongoing model misuse within Neo Darwinism which has been completely taken over by Haldane and Hamilton's mathematics (Hamilton's Rule rb>c for the evolution of an altruistic in fitness trait). Hamilton's Model cannot be empirically falsified just non verified simply because no algebraic constant was included.

John Edser

sci.bio.evolution

Avatar of:

Posts: 0

January 26, 2012

As a researcher, I would be delighted to have pools of patients that volunteer to work with me directly, in exchange for being kept up on my results.  However researchers want to make useable discoveries, and thus would need to be protected from greedy lawyers and heirs.

Avatar of:

Posts: 0

January 26, 2012

The real barrier is not the public but the medical establishment who control access, data and samples.  By disintermediating them and going directly to the public we can indeed open up scientific research.  The Love Avon Army of Women (www.armyofwomen.org)  is an email list of over 360,000 women (70% without breast cancer and 30% survivors) who are interested in participating in research looking for the cause of breast cancer.  They have eagerly participated in over 57 studies throughout the US involving everything from online questionnaires to core breast biopsies of healthy women and genetic studies. The important issue, however, is that these be partnerships ie participants are part of determining what issues should be studied or have clinical importance.  As we prepare to launch the first totally online cohort study, the Health of Women, in early summer, we will be soliciting the women as well as the scientists for the questions we need to ask. 

Avatar of:

Posts: 0

January 26, 2012

This completely ignores the risks of social networks. PatientsLikeMe data was once known to be scraped by intruders. And that's one that we know publicly--who knows if there have been or will be other incidents. There's little legal protection beyond the labs for people. GINA is great, but limited--and unless there are more legal barriers to misuse of the information, I'd be reluctant to participate and I wouldn't advise my family to do so.

Avatar of:

Posts: 0

January 26, 2012

Genetic Alliance Registry and BioBank has tens of thousands of contributors - all lay owned and managed - http://www.biobank.org, and with proper privacy protections (we have our own IRB), we find individuals ready and willing to contribute.  With Sage Bionetworks (see previous post), we are working on building a commons to provide infrastructure for data sharing on a large scale.

Avatar of:

Posts: 0

January 26, 2012

Science has always been done by ordinary "people". Louis Armstrong was once asked "is jazz just a folk music?" He replied ""well I ain't seen no horses playing it !". The question is what role do intelligent people who work outside of the scientific establishment have within the sciences? History answers: "everything". Major paradigm shifts were completed by Einstein (a patent clerk) Mendel (a monk) and Darwin (an amateur collector).

Science is empirically applied reason; anyone can (and do) do it but only when they follow the scientific method.  I may add that the rise, rise of of non falsifiable mathematical modeling within our Post Modern society has led to model misuse within the scientific establishment (as well within the arts and economics). As an amateur evolutionary theorist I have documented ongoing model misuse within Neo Darwinism which has been completely taken over by Haldane and Hamilton's mathematics (Hamilton's Rule rb>c for the evolution of an altruistic in fitness trait). Hamilton's Model cannot be empirically falsified just non verified simply because no algebraic constant was included.

John Edser

sci.bio.evolution

Avatar of:

Posts: 0

January 27, 2012

People are very altruistic and more than happy to participate in these efforts.  Through the Love/Avon Army of Women (www.armyofwomen.org) we have recruited over 360,000 women who are willing to participate in research to find the cause of breast cancer.  They decide which studies to join which include everything from online questionnaires to core biopsies of normal breasts and dna tests. The issue is forging the partnerships directly between the public and the researchers and not using the medical enterprise as a go between.  

Avatar of:

Posts: 0

January 27, 2012

People are very altruistic and more than happy to participate in these efforts.  Through the Love/Avon Army of Women (www.armyofwomen.org) we have recruited over 360,000 women who are willing to participate in research to find the cause of breast cancer.  They decide which studies to join which include everything from online questionnaires to core biopsies of normal breasts and dna tests. The issue is forging the partnerships directly between the public and the researchers and not using the medical enterprise as a go between.  

Avatar of: Dr. Susan Love

Dr. Susan Love

Posts: 1457

January 27, 2012

People are very altruistic and more than happy to participate in these efforts.  Through the Love/Avon Army of Women (www.armyofwomen.org) we have recruited over 360,000 women who are willing to participate in research to find the cause of breast cancer.  They decide which studies to join which include everything from online questionnaires to core biopsies of normal breasts and dna tests. The issue is forging the partnerships directly between the public and the researchers and not using the medical enterprise as a go between.  

Avatar of: kurt_gielen

kurt_gielen

Posts: 1

January 29, 2012

As long as you start by giving participants full control over their data and force everybody who wants to use that data to get people to opt-in, I believe you will see more and more people willing to contribute when the benefits become more obvious over time. The key to me is to let the individuals remain control over their data.

Avatar of:

Posts: 0

January 29, 2012

As long as you start by giving participants full control over their data and force everybody who wants to use that data to get people to opt-in, I believe you will see more and more people willing to contribute when the benefits become more obvious over time. The key to me is to let the individuals remain control over their data.

Avatar of:

Posts: 0

January 29, 2012

As long as you start by giving participants full control over their data and force everybody who wants to use that data to get people to opt-in, I believe you will see more and more people willing to contribute when the benefits become more obvious over time. The key to me is to let the individuals remain control over their data.

Avatar of:

Posts: 0

January 30, 2012

All human genomic and phenomic data that are available will become available online within the next 5-10 years. There are already >20K whole human genomes, from anonmyized, de-identified participants, that can be obtained from different sources, including the NIH. It does not matter how these data are protected, including the NSA AES standards, they can be hacked [1]. In addition, the number of individuals with secret and top-secret clearance in the greater DC area has grown exponentially over the last decade - a requirement now for many federal or related contractor jobs - the more the number of people that know a secret, the greater the likelihood of secrets being revealed.

I believe that federal health policy has to change. PHI is already obtained by investigators from the Medical Insurance Bureau ("risk revealed") to match pre-existing conditions to individual patients [2]. The Million Veteran Program of the Veteran's Administration will perform GWS and WGA on volunteers. To date, 15,000 have signed up, and the program has just started.

If you are older, like myself - talk to your teenage or college age children. They realize that it is preposterous to believe that health data can be protected in this era of cloud and distributed computing.[1] http://research.microsoft.com/...
[2] http://www.mib.com/

Avatar of:

Posts: 0

January 30, 2012

All human genomic and phenomic data that are available will become available online within the next 5-10 years. There are already >20K whole human genomes, from anonmyized, de-identified participants, that can be obtained from different sources, including the NIH. It does not matter how these data are protected, including the NSA AES standards, they can be hacked [1]. In addition, the number of individuals with secret and top-secret clearance in the greater DC area has grown exponentially over the last decade - a requirement now for many federal or related contractor jobs - the more the number of people that know a secret, the greater the likelihood of secrets being revealed.

I believe that federal health policy has to change. PHI is already obtained by investigators from the Medical Insurance Bureau ("risk revealed") to match pre-existing conditions to individual patients [2]. The Million Veteran Program of the Veteran's Administration will perform GWS and WGA on volunteers. To date, 15,000 have signed up, and the program has just started.

If you are older, like myself - talk to your teenage or college age children. They realize that it is preposterous to believe that health data can be protected in this era of cloud and distributed computing.[1] http://research.microsoft.com/...
[2] http://www.mib.com/

January 30, 2012

All human genomic and phenomic data that are available will become available online within the next 5-10 years. There are already >20K whole human genomes, from anonmyized, de-identified participants, that can be obtained from different sources, including the NIH. It does not matter how these data are protected, including the NSA AES standards, they can be hacked [1]. In addition, the number of individuals with secret and top-secret clearance in the greater DC area has grown exponentially over the last decade - a requirement now for many federal or related contractor jobs - the more the number of people that know a secret, the greater the likelihood of secrets being revealed.

I believe that federal health policy has to change. PHI is already obtained by investigators from the Medical Insurance Bureau ("risk revealed") to match pre-existing conditions to individual patients [2]. The Million Veteran Program of the Veteran's Administration will perform GWS and WGA on volunteers. To date, 15,000 have signed up, and the program has just started.

If you are older, like myself - talk to your teenage or college age children. They realize that it is preposterous to believe that health data can be protected in this era of cloud and distributed computing.[1] http://research.microsoft.com/...
[2] http://www.mib.com/

Avatar of: tomaszs

tomaszs

Posts: 1

February 22, 2012

We just launched Transparency Life Sciences http://www.transparencyls.com/ - one of the aims is to utilize tremendous energy existing in patients internet communities and channel it into design of scientifically sound clinical studies. All data will be visible to participants, and website visitors.
T. Sablinski, MD   

Avatar of:

Posts: 0

February 22, 2012

We just launched Transparency Life Sciences http://www.transparencyls.com/ - one of the aims is to utilize tremendous energy existing in patients internet communities and channel it into design of scientifically sound clinical studies. All data will be visible to participants, and website visitors.
T. Sablinski, MD   

Avatar of:

Posts: 0

February 22, 2012

We just launched Transparency Life Sciences http://www.transparencyls.com/ - one of the aims is to utilize tremendous energy existing in patients internet communities and channel it into design of scientifically sound clinical studies. All data will be visible to participants, and website visitors.
T. Sablinski, MD   

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