@NIH observes #PRIDE month – How research impacts LGBTQ communities

NIH is observing PRIDE month this June with events on the NIH campus and the ‘telling our stories’ campaign. The Office of Equity, Diversity, and Inclusion (EDI), along with the Sexual & Gender Minority Research Office, and the National Institute of Minority Health and Health Disparities are bringing awareness this PRIDE month to how research impacts sexual and gender minority communities. See the NIH Director Francis Collins’ statement to NIH staff for pride month below.

Check out the NIH EDI website here for ‘Telling Our Stories’ and more. Or on twitter @NIH_EDI.

Dear Staff,

The National Institutes of Health (NIH) is committed to the principles of equal employment opportunity, diversity, and inclusion in our research and workplace.  As part of that commitment, the NIH will be celebrating this year’s Pride Month with a variety of activities that highlight the meaning of including the sexual and gender minority (SGM) community in our work.  The Office of Equity, Diversity, and Inclusion (EDI), the Sexual & Gender Minority Research Office, and the National Institute of Minority Health and Health Disparities are sponsoring several events that will address key areas of interest in working with SGM populations.  The goal of these activities is to understand, in very specific ways, how research impacts sexual and gender minority communities, and how best to conduct research with and for SGM populations.

The theme for this year’s NIH Pride Month is “Telling Our Stories, Claiming Our Power, Standing in Our Truth.”  This theme reflects our understanding of the importance of storytelling in the biomedical research setting.  In each of the four Pride Month events, we have the opportunity, perhaps for the first time, to look at research from a new and different perspective.

Throughout the month-long celebration, EDI will make available on their website video testimonials and written accounts of members of the NIH SGM community and their allies. Through this campaign, we will have the honor of hearing their stories and learning from their experiences.

Each of us has the ability and the responsibility to learn about, understand, and work for the interests of those groups that invite us and trust us to explore research opportunities within their communities.  I hope that during the month of Pride you will pause to reflect upon the diversity of the SGM population and the importance of including this community in our research and other related activities.  SGM research sits at the intersection of our ongoing commitment to equal employment opportunity, diversity and inclusion, and our mission of turning discovery into health.

For more information on the Pride events happening on the NIH campus, please visit http://edi.nih.gov/pride and follow EDI on twitter and Instagram at @NIH_EDI.

Sincerely yours,

Francis S. Collins, M.D., Ph.D.

Director

Measles and Pertussis outbreaks tied to vaccine refusal @NIHDirector #science

Parents have a responsibility not only to their own children, but to their communities—it’s only by achieving a very high level of population immunity that outbreaks can be prevented. Vaccination is particularly crucial for children with cancer and other diseases that cause immunosuppression. They cannot be vaccinated safely, but are at high risk of severe consequences if they are infected—and, thus, they depend on the community’s so-called “herd immunity” for protection against a potentially fatal illness.

While some parents continue to express concern about a possible link between vaccines and autism spectrum disorders, the original report claiming this connection has been debunked and retracted.  A large number of carefully designed follow up studies have been carried out, and the overwhelming weight of scientific evidence shows no evidence for such a link. That’s why it continues to be so important to get the word out to parents: Have your kids vaccinated.

What to get NIH director Francis Collins for Christmas #tistheseason

NIH director Francis Collins wants only one thing for Christmas this year (well, maybe alsoan increase in NIH budget, but I guess he checked that one off the list already)… your thoughts! Specifically, your thoughts on how to make his blog better:

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From my “house” at NIH to yours, I’d like to wish each of you and your loved ones a wonderful holiday season and a happy, healthful New Year. Throughout the past year, I hope that you’ve enjoyed the entries in this blog, sharing just a few of the many breakthroughs in biomedical research and introducing you to some of the young scientists who fill me with such hope for the future. As we prepare to turn the NIH Director’s Blog calendar to 2016, I look forward to bringing you even more exciting discoveries that show the power of science to build a healthier tomorrow.

But I need your help! In this season of giving, I’d like to ask each of you for a little something: your thoughts on how to make what I think is a good blog even better. So, please click on the “gift” below to take part in a brief, anonymous survey that should take no more than a couple of minutes. Thanks so much for your time!

Fill out the Director’s blog readership survey here!!

Boost in funding for NIH?! #AboutTime #StillNotEnough

Covered in Politico last week, looks like NIH is finally getting the attention it deserves and hopefully a much-needed boost in funding as well.

In summary, the “21st Century Cures Act” just passed the vote in the house of representatives (yippee), and now goes on to the senate.  A lot of the provisions on this bill are administrative stuff (think: how long the NIH director can serve, etc); HOWEVER a key provision creates a new NIH Innovation Fund and calls for $9.35 billion in funding.  This will be particularly helpful for those of us early in our careers.

After a dozen years of flat funding, the National Institutes of Health has become a top target on Capitol Hill — not for less money but more, potentially billions more by 2020.

It’s a remarkable turnaround for the huge medical research agency, one triggered by a confluence of circumstances. Fears that the United States is losing ground to international competitors in science and technology synched with lawmakers’ need to show frustrated voters that they can work in a bipartisan manner, and NIH offered “an easy win” on both, advocates say

Add in the institutes’ director, Francis Collins, a scientific celebrity with guitar-playing, motorcycle-riding everyman charm, who has wooed over 300 lawmakers in recent years. Plus crowds of patients flooding the halls of the Capitol and headlines about the fantastic promise of new cancer immunotherapies.

All of this has made for a billion-dollar movement — or $2 billion, as Senate appropriators have proposed adding to NIH’s budget next year. Even lawmakers whose usual mantra is fiscal restraint and less government spending are now among the agency’s most vocal cheerleaders.

If anything, said Emily Holubowich, executive director of the nonprofit Coalition for Health Funding, there’s “competition among lawmakers of who is going to save NIH first.”

As the largest supporter of biomedical research in the world, NIH has long had an aura about its work that gave it almost sacred space amid partisan bickering. Although that didn’t protect it from sequestration in 2013, the fallout may have been a blessing in disguise, underscoring the urgency for funding and reinvigorating efforts by advocates and the research community to help the agency regain ground.

“The broader pressures of sequestration and austerity” have “really put a lot of pressure on lawmakers, and rightfully so, that this is not acceptable,” Holubowich said.

Yet those other factors played heavily into the recent moves for greater resources. The emergence of key research-driven efforts like the president’s Precision Medicine Initiative and the House’s 21st Century Cures Act only intensified the interest.

Continue reading

NIH will NOT fund research involving gene-editing technology in human embryos #drama

From the NIH directors blog, Francis Collins just issued a statement on the NIH stance toward gene editing on human embryos:

NIH will not fund any use of gene-editing technologies in human embryos. The concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives, and has been viewed almost universally as a line that should not be crossed. Advances in technology have given us an elegant new way of carrying out genome editing, but the strong arguments against engaging in this activity remain. These include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent, and a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos.

This comes in response to a Chinese group who has used the CRISPR/Cas9 system to delete a gene from human embryos that causes a fatal blood disorder.  There has been quite a bit of controversy on this new technique, which has led to the developers of the CRISPR/Cas9 system to call for a moratorium. Read the full statement from the NIH director here.

CauseScience would love to hear your thoughts on this new technology! Do we need to control the usage of this gene editing technology? Are scientists pushing the technology too fast without considering ethical implications? Is gene editing ethical?   Comment or tweet @CauseScience1

#SCIENCE Quotable: NIH’s Francis Collins and Tony Fauci – Think Globally #science

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Check out the full editorial here in Science Magazine. #TonyFauciIsMyHero!

The U.S. National Institutes of Health (NIH) has for more than 60 years supported research to improve the health and prolong the lives of people in the United States and around the world. Mean life expectancy worldwide has doubled to more than 70 years, due in large part to medical and public health interventions developed with NIH funding. Now, in the face of serious fiscal constraints, the idea has reemerged from some congressional leaders and disease constituency groups to more closely align NIH funding for disease research with disease burden in the United States. Although the nation must maintain robust research support for diseases that cause illness and death among large numbers of Americans, it would be unwise to deemphasize diseases that exact their largest toll elsewhere in the world. The United States has a vital interest in the health of people around the globe, rooted in an enduring tradition of humanitarian concern as well as in enlightened self-interest. Engagement in global health protects the nation’s citizens, enhances the economy, and advances U.S. interests abroad.

#Science Quotable: NIH Director Francis Collins – US will relinquish its lead in biomedical science

Given international trends, the United States will relinquish its historical international lead in biomedical research in the next decade unless certain measures are undertaken.

This is the issue that wakes me up at night when I try to contemplate the future of where biomedical research can go in the United States. (Young Scientists) are finding themselves in a situation that is the least supportive of that vision in 50 years. They look ahead of them and see the more senior scientists struggling to keep their labs going and suffering rejection after rejection of grants that previously would have been supportive. And they wonder, ‘Do we really want to sign up for that?’ And many of them, regrettably, are making the decision to walk away.

NIH Director Francis Collins referencing a recent article in the medical journal JAMA.