ENTRIES TAGGED "research"
In which the question of whether research subjects have any rights to their data is pondered.
The GET (Genomes, Environments and Traits) conference is a confluence of parties interested in the advances being made in human genomes, the measurement of how the environment impacts individuals, and how the two come together to produce traits. Sponsored by the organizers of the Personal Genome Project (PGP) at Harvard, it is a two-day event whose topics range from the appropriate amount of access that patients should have to their genetics data to the ways that Hollywood can be convinced to portray genomics more accurately.
It also is a yearly meeting place for the participants in the Personal Genome Project (one of whom is your humble narrator), people who have agreed to participate in an “open consent” research model. Among other things, this means that PGP participants agree to let their cell lines be used for any purposes (research or commercial). They also acknowledge ahead of time that because their genomes and phenotypic traits are being released publicly, there is a high likelihood that interested parties may be able to identify them from their data. The long term goal of the PGP is to enroll 100,000 participants and perform whole genome sequencing of their DNA, they currently have nearly 2,300 enrolled participants and have sequenced around 165 genomes.
Kate Crawford argues for caution and care in data-driven decision making.
Microsoft principal researcher Kate Crawford (@katecrawford) gave a strong talk at last week’s Strata Conference in Santa Clara, Calif. about the limits of big data. She pointed out potential biases in data collection, questioned who may be excluded from it, and hammered home the constant need for context in conclusions. Video of her talk is embedded below:
Crawford explored many of these same topics in our interview, which follows.
The United States National Institutes of Health (NIH) wants to tie development of mobile health apps to evidence-based research, and it hopes to do that with a new grant program. The imperative to align developers with research is urgent, given the strong interest in health IT, mobile health and health data. There are significant challenges for the space, from consumer concerns over privacy and mobile applications to the broader question of balancing health data innovation with patient rights.
To learn more about what’s happening with mobile health apps, health data, behavioral change and cancer research, I recently interviewed Dr. Abdul Sheikh. Our interview, lightly edited for content and clarity, follows.
What led you to your current work at NIH?
Dr. Abdul Sheikh: I’ve always had a strong grounding in public health and population health, but I also have a real passion for technology and informatics. What’s beautiful is, in my current position here as a program director at the National Cancer Institute (NCI), I have a chance to meld these worlds of public health, behavior and communication science with my passion for technology and informatics. Some of the work I did before coming to the NIH was related to the early telemedicine and web-based health promotion efforts that the government of Canada was involved in.
At NCI, I direct a portfolio of research on technology-mediated communication. I’ve also had the chance to get involved and provide leadership on two very cool efforts. One of them is leadership for our division’s Small Business Innovation Research Program (SBIR). I’ve led the first NIH developer challenge competitions as well.
Dr. Stephen Friend on open science and the need for a "GitHub for scientists."
To unlock the potential of health data for the public good, balancing health privacy with innovation will rely on improving informed consent. If the power of big data is to be applied to scientific inquiry in health care, unlocking genetic secrets, finding a cure for breast cancer or “preemptive health care,” changes in scientific culture and technology will both need to occur.
One element of that change could include a health data commons. Another is open access in the research community. Dr. Stephen Friend, the founder of Sage Bionetworks, is one of the foremost advocates of what I think of as “open science.” Earlier in his career, Dr. Friend was a senior vice president at Merck & Co., Inc., where he led the pharmaceutical company’s basic cancer research program.
In a recent interview, Dr. Friend explained what open science means to him and what he’s working on today. For more on the synthesis of open source with genetics, watch Andy Oram’s interview with Dr. Friend and read his series on recombinant research and Sage Congress.
MIT and Massachusetts plan a big data initiative, Cisco predicts the Internet's big data future.
MIT announces a big data research center, Cisco predicts the future of the Internet (in zettabytes), and open data startup Junar announces seed funding.
A visualization tool from the OECD, concerns about open data and research, and updates to Hadoop.
In this week's data news, a visualization tool charts your "better life," researchers have concerns about access to data, and updates to Hadoop.
Dr. Audie Atienza focuses on the intersection of behavioral science, data and healthcare apps.
We're just at the beginning of discovering how to best develop and utilize mobile technology to improve the health of individuals and the public, says Dr. Audie Atienza.
Figshare wants research data, Accel makes a huge data investment, LinkedIn shares its DataFu.
Figshare relaunches with an eye toward making more research data accessible. Elsewhere, Accel invests $52.5 million in Code 42 and LinkedIn open sources DataFu.
Dynamic pricing angers some Uber users, Hadoop hits 1.0, a possible set back for open-access research.
Uber's dynamic pricing worked as intended on New Year's Eve, but not everyone is happy about that. Elsewhere, Hadoop reaches the 1.0 milestone and proposed legislation seeks to repeal an open-access research policy.
Drew Conway on how data science intersects with research and the social sciences.
Strata speaker and PhD candidate Drew Conway discusses how data science is influencing the processes and outcomes of academic research in the social sciences.