Series of ethical stumbles tests NIH’s reliance on private sector for research funding

Lev Facher
STAT News
Originally published August 1, 2018

Here is an excerpt:

Now, the NIH is seeking to bounce back from the hit to its reputation — and to demonstrate that the failures of recent years are isolated incidents and not emblematic of a broader cultural problem. At the same time, some congressional aides have hinted at more aggressive oversight of the foundation through which the NIH takes on many of its partnerships.

NIH officials told STAT this week the agency is completing a plan to ensure better ethical compliance and better delineate the actual process for private-sector collaboration. The officials said the plan will be presented to an advisory committee in December.

Already, as STAT reported in April, the NIH proactively nixed a long-touted plan to accept roughly $200 million from pharmaceutical manufacturers to pursue research on pain and addiction treatment, with an explicit acknowledgement that involving companies being sued for their role in the crisis could taint the perception of the research.

NIH Director Francis Collins acknowledged the setbacks in an interview with STAT this week, but defended his staff’s efforts.

The info is here.

Should the police be allowed to use genetic information in public databases to track down criminals?

Bob Yirka
Phys.org
Originally posted June 8, 2018

Here is an excerpt:

The authors point out that there is no law forbidding what the police did—the genetic profiles came from people who willingly and of their own accord gave up their DNA data. But should there be? If you send a swab to Ancestry.com, for example, should the genetic profile they create be off-limits to anyone but you and them? It is doubtful that many who take such actions fully consider the ways in which their profile might be used. Most such companies routinely sell their data to pharmaceutical companies or others looking to use the data to make a profit, for example. Should they also be compelled to give up such data due to a court order? The authors suggest that if the public wants their DNA information to remain private, they need to contact their representatives and demand that legislation that lays out specific rules for data housed in public databases.

The article is here.

GAO to Review Ethics, Funding of Trump Transition

Eric Katz
Government Executive
Originally published April 11, 2017

The federal government’s internal auditor is commencing a review of President Trump’s transition into office, examining potential conflicts of interest, contacts with foreign government and funding sources.

The Government Accountability Office is launching the review after Sen. Elizabeth Warren, D-Mass., and Rep. Elijah Cummings, D-Md., requested it. GAO will determine how the General Services Administration managed the transition and its funding mechanisms, what Trump’s transition spent those funds on and how much private funding it collected. The auditors will also probe the Office of Government Ethics to evaluate what information it made available to the transition team and to what extent Trump’s associates took advantage of OGE’s offerings versus the previous two transitions.

The article is here.

Why you should worry about the privatization of genetic data

Kayte Spector-Bagdady
The Conversation
Originally posted September 8, 2016

Here is an excerpt:

But genetic data banks amassed by private companies don’t necessarily have to follow the same regulations regarding access to their data that federally funded researchers do. And a recent proposal to change consent regulations for human research may make it cheaper for private companies to collect and use this data than public ones.

As bioethicists (myself included) have warned, we need to pay attention to concerns about how these private genetic data banks are used and accessed before we enable a system where the future of public genetic research lies in private hands.

The article is here.

The Power of Nudges, for Good and Bad

By Richard Thaler
The New York Times - The Upshot
Originally published October 31, 2015

Here are two excerpts:

Whenever I’m asked to autograph a copy of “Nudge,” the book I wrote with Cass Sunstein, the Harvard law professor, I sign it, “Nudge for good.” Unfortunately, that is meant as a plea, not an expectation.

Three principles should guide the use of nudges:

■ All nudging should be transparent and never misleading.

■ It should be as easy as possible to opt out of the nudge, preferably with as little as one mouse click.

■ There should be good reason to believe that the behavior being encouraged will improve the welfare of those being nudged.

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Some argue that phishing — or evil nudging — is more dangerous in government than in the private sector. The argument is that government is a monopoly with coercive power, while we have more choice in the private sector over which newspapers we read and which airlines we fly.

I think this distinction is overstated. In a democracy, if a government creates bad policies, it can be voted out of office. Competition in the private sector, however, can easily work to encourage phishing rather than stifle it.

One example is the mortgage industry in the early 2000s. Borrowers were encouraged to take out loans that they could not repay when real estate prices fell. Competition did not eliminate this practice, because it was hard for anyone to make money selling the advice “Don’t take that loan.”

The entire article is here.

Billionaires With Big Ideas Are Privatizing American Science

By William J. Broad
The New York Times
Originally published March 15, 2014

Here is an excerpt:

Absent from his narrative, though, was the back story, one that underscores a profound change taking place in the way science is paid for and practiced in America. In fact, the government initiative grew out of richly financed private research: A decade before, Paul G. Allen, a co-founder of Microsoft, had set up a brain science institute in Seattle, to which he donated $500 million, and Fred Kavli, a technology and real estate billionaire, had then established brain institutes at Yale, Columbia and the University of California. Scientists from those philanthropies, in turn, had helped devise the Obama administration’s plan.

American science, long a source of national power and pride, is increasingly becoming a private enterprise.

The entire story is here.