Life and Science

Advocacy in rare disease: Closing the funding gap

Thu, 20 Jul 2023 16:30:00 +0000

Public–private partnerships also play a key role in closing the
funding gap. They can facilitate knowledge-sharing, resource-pooling,
and joint efforts toward finding effective treatments and cures.
Advocating for international cooperation is another key strategy.
Establishing global networks and collaborations that include venture
capitalists and banks can facilitate the sharing of research findings,
best practices, and funding opportunities. International funding bodies
and foundations can also prioritize rare disease research and encourage
collaboration across borders.

In this panel discussion, participants will:

Learn how closing the funding gap in rare diseases requires a multi-faceted approach
Hear strategies for increasing government funding, collaboration among stakeholders, and international cooperation
Get information on how rare disease research can benefit not only
those with rare diseases and their communities, but the wider world as
well.

More info in our website : https://www.fondation-ipsen.org/webinar/webinar-advocacy-in-rare-disease-closing-the-funding-gap/

This podcast was adapted from a webinar co-organized by AAAS Science Magazine and Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Advocacy in rare disease: Crafting the public narrative

Wed, 14 Jun 2023 12:58:34 +0000

Advocacy in rare disease is complex and challenging, but there are
effective methods that advocates can use to communicate with the public.
In this panel discussion, experts in communication, public relations,
and influencing will discuss strategies and tactics to advance advocacy
for rare disease.

With:

Mary Dunkle (National Organization for Rare Disorders, Quincy, MA)
Sparsh Shah (Musician, motivational speaker, philanthropist, and patient advocate, Iselin, NJ)
Anne Rancourt (National Institutes of Health, Bethesda, MD)
Erika Gebel Berg, Ph.D., moderator (Science/AAAS, Washington, DC)

This podcast was adapted from a mebinar co-organized by AAAS/Science and Fondation Ipsen

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Advocacy in rare disease: Surveying the landscape

Thu, 11 May 2023 13:35:27 +0000

In this podcast, first episode in the 2023 Science/AAAS Fondation Ipsen series on advocacy in rare disease, our guests examine the advocacy landscape, asking: what does advocacy entail,
who are advocates, what organizations are involved with rare disease
advocacy, what determines how umbrella organizations allocate resources,
and what is effective—examining success stories of when advocacy has
worked.

With:

Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)
Michael Manganiello (Pyxis Partners, Washington, DC)
Marc C. Patterson, M.D. (Mayo Clinic, Rochester, MN)
Flaminia Macchia, M.A. (Roche, Brussels, Belgium)

And Erika Gebel Berg, Ph.D., our moderator

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Humanizing the support of patients living with a Rare Disease

Tue, 15 Nov 2022 08:33:45 +0000

"The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients" : a free podcast recorded during a webinar organized by Science Magazine and Fondation Ipsen.

Health care systems are not equipped to provide the psychological and social support patients need. Genetic counseling is complex in the setting of undiagnosed patients. Layered on this is the complexity of supporting the mental or physical disabilities that many patients with a rare disease must manage, whether they have a diagnosis or not. The humanistic support of patients with rare diseases and their families needs to improve. In this webinar, you’ll meet experts who struggle with these issues and can help guide us on how to do better.

Our guests:

Kathleen Bogart, Ph.D. (Oregon State University, Corvallis, Oregon)

Amrit Ray, M.D., M.B.A. (Physician researcher/Rare disease advocate, New Haven, CT)

Alanna Yee (Encephalitis411, Edmonton, Canada)

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The urgent need to internationalize databases for rare disease patients

Mon, 03 Oct 2022 08:15:33 +0000

During this podcast (recorded during a webinar co-organized by Fondation Ipsen and Science Magazine), our guests (all experts in rare disease) discussed about
the need of patient registries.

There is no international database on rare disease genotypes, no
standardized nomenclature for phenotypes, and not even an agreed-upon
consent process to acquire, store, and maintain such data. This deficit
disadvantages patients and thwarts the development of new therapies.

A universal approach is needed to gather, store, and share phenotypic
and genotypic data for rare diseases. We require an accepted,
trustworthy system that protects patient identities while sharing
critical data needed to advance diagnosis and treatment. This free
webinar will interrogate global experts on how to drive this unmet and
urgent need forward.

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Doing better where it counts: Bringing rare disease care to underserved populations

Mon, 29 Aug 2022 10:19:45 +0000

We are on the brink of new solutions that include accessing specialized
care through telemedicine, diagnosis through mail-in specimens, and
computer-aided remote phenotyping. This webinar discusses how new
systems and technologies can close the chasm that prohibits those with
rare diseases living in underserved countries and communities from
getting critically needed care.

https://www.fondation-ipsen.org/webinar/webinar-bringing-rare-disease-care-to-underserved-populations/

with:

Consuelo Wilkins, M.D., MSCI (Vanderbilt University Medical Center, Nashville, TN)

Linda Goler Blount, M.P.H. (Black Women’s HealthImperative, Atlanta, GA)

Nakela L. Cook, M.D., M.P.H. (Patient-Centered Outcomes Research Institute (PCORI), Washington, DC)

Jamie Sullivan, M.P.H. (EveryLife Foundation, Washington, DC)

Sean Sanders, Ph.D. (Science/AAAS, Washington, DC; moderator)

This podcast is adapted from a webinar broadcast by Science magazine, with the sponsorship of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Where hope knocks: Personalized therapies in rare disease

Thu, 07 Jul 2022 17:00:00 +0000

New drug design methodologies allow us to contemplate designer medicines for
very small groups of patients or even individuals. The future holds
promise for the rare disease community because modern biotech can build
bespoke (customized) therapies. Are we at the dawn of personalized
treatments being widely available for individual patients? This poses a
broader question: Just as every person is unique, could all medicines
become so too?

This podcast is the audio recording of a webinar launched by AAAS / Science Magazine and Fondation Ipsen.

With:

Genine Winslow, M.Sc. (Chameleon Biosciences, San Anselmo, CA)
Tiina Urv, Ph.D. (National Institutes of Health, Bethesda, MD)
Viviana Giannuzzi, Pharm.D., Ph.D. (Fondazione Gianni Benzi Onlus, Bari, Italy)
Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

Mon, 30 May 2022 12:43:47 +0000

This podcast is adapted from a webinar launched by Science Magazine, with the support of Fondation Ipsen.

Innovation hubs could provide a viable option to leverage common goals and opportunities, providing shared protocols for handling phenotypic, clinical, and genetic data, while also prioritizing and amplifying the voices of patients living with a rare disease. They could bring together the best international policy structures to streamline efficient and effective medical and scientific advances in rare disease detection, diagnosis, and treatment. This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can work efficiently together to deliver solutions to the millions of diagnosed and undiagnosed patients in need.

With:
Marshall Summar, M.D. (Children’s National Hospital, Washington, DC)
Zizi Imatorbhebhe, M.B.A., M.S., P.M.P (ERGOMED PLC, Raleigh, NC)
Anna Lehman, M.D. (University of British Columbia and Vancouver General Hospital, Vancouver, Canada)
Vinodh Narayanan, M.D. (TGen, Phoenix, Arizona)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)

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Reimagining rare disease detection: Who needs to be at the table?

Fri, 15 Apr 2022 12:03:56 +0000

Rare disease detection is an interdisciplinary and international
problem. Building a solution must include internationally agreed-upon
diagnostic criteria for each rare disease, patient access to diagnostic
technologies, and effective communication strategies between health care
workers and patients. In addition, relevant medical databases (e.g.,
patient DNA data) need to be international, multilingual, and readily
accessible, crossing all socioeconomic boundaries. Academia, business,
biopharma, artificial intelligence experts, international governmental
agencies, and health care organizations will need to be at the table.
Most importantly, patient voices need to be heard and honored, giving
advocacy groups a central role.

during this podcast, our diverse panel of thought leaders will
tackle these issues and suggest a path forward for reforming and
rethinking how rare disease detection and diagnosis is done.

with:

William A. Gahl, M.D., Ph.D. (National Institutes of Health, Bethesda, MD)
Cristina Casanova Might, B.S., M.B.A. (Undiagnosed Diseases Network Foundation, Birmingham, Alabama)
Avril Daly (EURORDIS, Paris, France)
Charlene Son Rigby, B.A., M.B.A. (RARE-X, Aliso Viejo, CA)
Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Uniquely singular: Exploring what it means to be rare

Fri, 19 Nov 2021 12:32:27 +0000

Pick any two humans on Earth and analysis will show that their DNA is around 99.9% identical. But that tiny 0.1% difference, in combination with our environment, is what makes us unique. We each have a singular experience of the world—the interactions we have, the food we eat, the diseases we suffer. In this final webinar in our 2021 series on rare diseases, we will take a critical look at the importance of understanding our rarity and uniqueness as a way to understand the human condition, our needs, and health. We will explore the importance of being “rare” and move past our innate desire for homogeneity and the comfort of conformity, to embrace heterogeneity and difference. Valuing differences is a pathway to growth and progress as individuals and societies. Having explored the unique challenges of people with rare diseases, might we argue that all disease is unique for the person who endures it?

With:

Ioannis Thomas Pavlidis, Ph.D. (University of Houston, Houston, Texas)
Inês Pires Santos Ramos Pinheiro, Ph.D. (Institut Curie, Paris, France)
Judith S. Kaur, M.D. (Mayo Clinic, Jacksonville, Florida)
Terrence Forrester, M.D., Ph.D. (The University of the West Indies, Kingston, Jamaica)

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What’s the plan? From detection to diagnosis to treatment of rare diseases

Tue, 02 Nov 2021 14:36:33 +0000

If our ability to test for and detect rare diseases can be significantly
improved, a predictable future challenge will be that patients are
diagnosed but there is no available means or expertise to provide
optimal treatment and ongoing support. In this webinar, we will discuss
strategies for solving this issue, including how data collected by
international consortia in diverse settings might inform possible
solutions, and how these solutions might be implemented.

With:

Domenica Taruscio, M.D. (National Centre for Rare Diseases, Rome, Italy)

Tim Guilliams, Ph.D. (Healx, Cambridge, UK)

David A Pearce, Ph.D. (Sanford Health, Sioux Falls, SD)

Marta Mosca, M.D., Ph.D. (University of Pisa, Pisa, Italy)

Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

This podcast was adapted from a webinar launched by Science Magazine, with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

The psychological cost of rare disease

Fri, 29 Oct 2021 09:27:06 +0000

It has been well established that mental health goes hand in hand with
physical health. Living with a chronic condition places a daily
emotional strain on both patients and caregivers. For those with a rare
disease, the situation is exacerbated by unique challenges, including
longer time to diagnosis; more frequent misdiagnoses; few, if any,
available treatments; and often complex care. This greater mental load,
accompanied by the physical challenges that come with a rare disease,
has profound psychological implications. In addition, there are
intractable well-being issues around genetic testing that need to be
addressed, in concert with the real possibility of genetic therapies in
the near future. How can these realities be compassionately and
sensitively discussed, and how might they impact the way patients think
about their medical condition? In this webinar, we examine these issues
and address how physicians and the medical community can better support
those living with a rare disease as well as their caregivers.

With:

Kathleen Bogart, Ph.D. (Oregon State University, Corvallis, Oregon)

Debra Regier, M.D., Ph.D. (Children’s National Hospital, Washington, DC)

Amy Hunter, Ph.D. (Genetic Alliance UK, London, UK)

Kym Winter (Rareminds, St. Albans, UK)

Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

This podcast is the audio recording of a webinar launched by Science magazine, made in collaboration with Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Finding rare diseases in common places

Mon, 16 Aug 2021 08:07:31 +0000

To improve treatment of rare diseases, it is critical that rare disease
detection approaches be improved, particularly in primary care settings
and in public health testing places such as health centers. These
environments constitute the front line for disease detection and play an
outsized role in protecting the public, particularly children.
Normally, emphasis is placed on testing for common diseases, which are
allocated most of the resources. But it could be argued that when
considered as a group, rare diseases are in fact common, and that
putting more resources toward their detection in primary health care
systems is a valid approach for improving diagnosis. In this webinar,
our experts will discuss strategies for implementing broad rare disease
detection across all doctor–patient interactions.

With:

Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)
Helen Malherbe, Ph.D. (Rare Diseases South Africa, Johannesburg, South Africa)
Eyby Leon Janampa, M.D. (Children’s National Hospital, Washington, DC)
Dong Dong Ph.D. (The Chinese University of Hong Kong, Hong Kong SAR, China)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)

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Intelligent detection and diagnosis of rare diseases

Sat, 17 Jul 2021 16:00:00 +0000

This podcast is the audio recording of a webinar launched by Science Magazine and Fonation Ipsen.

This episode will attempt to explain the foundational concepts of AI and
explore how it is being applied to help identify, diagnose, test for,
and manage complex disorders, including rare diseases, in global
populations. Detection of rare disease is uniquely amenable to analysis
using AI, in part because the symptoms and laboratory tests can provide a
disease-specific “signature” that software can be trained to recognize.
But essential to these efforts is the collection and storage of
accurate and reliable data in accessible databases. Experts will discuss
how such data can be gathered and analyzed, including the application
of technologies such as AI to comb through thousands of medical records
to detect both known and new rare diseases, and to understand how to
best manage these conditions.

With:

Ben Solomon, M.D. (NHGRI, NIH, Bethesda, MD)
Sylvia Thun, M.D. (Charité Mental Health, Berlin, Germany)
Julián Isla (Foundation 29, Madrid, Spain)
Sandra Brasil, Ph.D. (Portuguese Association for Congenital Disorders of Glycosylation, Caparica, Portugal)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Neonatal testing for rare diseases: The power of knowing

Sat, 19 Jun 2021 16:00:00 +0000

While in concept it is straightforward to develop a neonatal testing panel for rare (and common) diseases, the greater challenges are in the dissemination of this panel and the training of medical personnel concerning what to do with the information. Neonatal testing represents a weapon for early detection of rare disease, but implementation is key. Additionally, how the results are shared with patients and what actions are taken based on those results are critical. Join this discussion to learn from experts about the pros and cons of neonatal (and prenatal) testing for rare diseases and what challenges face both the medical community treating these disorders and the patients living with them.

With:
Monica Wojcik, M.D. (Boston Children's Hospital & Harvard Medical School ; Boston, MA)
Roberto Giugliani, M.D., Ph.D. (Federal University of Rio Grande do Sul ; Porto Alegre, Brazil)
Melissa P. Wasserstein, M.D. (The Children's Hospital at Montefiore ; Bronx, NY)
James R. Bonham, Ph.D. (International Society for Neonatal Screening ; Maarssen, The Netherlands)
Sean Sanders, Ph.D. (moderator ; Science/AAAS ; Washington, DC)

This podcast is the audio recording of a webinar launched by Science magazine, with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Detecting rare disease- Revealing the methods, motivations, and implications

Sat, 08 May 2021 10:00:00 +0000

By their nature, rare diseases are difficult to detect because of their low overall occurrence in most populations. Improving identification and detection of these disorders, particularly early in the life of the patient, can have profound effects on the course of the disease and the quality of life of the patient and their family. This webinar will examine methods for detecting patients with rare diseases, particularly those with underlying genetic causes, explained in plain language. Our expert panel will describe the benefits and limitations of genetic testing, recent advances, and new technologies, including how developments in artificial intelligence might help uncover hidden rare diseases. Only a decade ago it cost a billion dollars to conduct a full genomic analysis; now this can be done for about $1,000. But how useful and actionable are the results? The variety of genetic tests available provide an array of information that can be confusing to the general population and medical practitioners alike. Tune in to learn how and why genetic testing is done, how to interpret the results, and what impact these results can have on families and patients managing a rare disease.

With:

Marshall Summar, M.D. (Children’s National Hospital, Washington, DC)

Cynthia Tifft, M.D., Ph.D. (National Institutes of Health, Bethesda, MD)

Jimeng Sun, Ph.D.(University of Illinois, Urbana-Champaign, Champaign, IL)

Helena Kääriäinen, M.D., Ph.D. (Finnish Institute for Health and Welfare, Helsinki, Finland)

Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

This podcast is adapted from a webinar organized by Science magazine, with the support of Fondation Ipsen.

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Fiscal fitness for scientists- The price you pay for ignorance

Fri, 23 Apr 2021 07:40:25 +0000

After a decade of study and educational costs approaching half a million U.S. dollars, a young scientist endures a life of endless hours, high stress, and low pay. Furthermore, the life of a junior scientist is one of frequent relocation, often abroad. Advancement up the scientific career ladder is fraught with high stress: the need to publish, raise grant funding, and achieve tenure. Despite low pay, the long work hours make obtaining a secondary income difficult or impossible. How can a young scientist save money, organize a retirement account, and financially plan for a comfortable life and retirement? The financial pressures of being a scientist are not limited to youngsters—with tenure becoming more difficult and likely to disappear, many more senior scientists have little or no financial security either. Is poverty the right price to pay for a career in science? Listen to this webinar to get fiscally fit.

With:

Diane Klotz, Ph.D. (Sanford Burnham Prebys Medical Discovery Institute, San Diego, CA)

Emily Roberts, Ph.D. (Personal Finance for PhDs, Seattle, WA)

Phil Schuman, M.B.A. (Indiana University, Bloomington, IN)

Annamaria Lusardi, Ph.D. (George Washington University and the Global Financial Literacy Excellence Center, Washington, DC)

Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)

This podcast was adapted from a webinar launched by Science Magazine, with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

The poor diagnosis of rare diseases

Mon, 19 Apr 2021 08:24:31 +0000

Patients with rare diseases must often wait many years for a diagnosis—a quarter of patients wait over 4 years to be diagnosed, while 50% of patients must live with no accurate diagnosis. Why is this, and can it be improved? In this installment of our Rare Diseases Series, we will discuss the broad challenges faced by the rare disease community across the world. A significant part of the problem is the lack of awareness among the medical and scientific community, but there are also obstacles put up by medical insurance companies and a broad failure in the public domain to appreciate the hurdles faced by patients with rare diseases. Being without a diagnosis can impact a patient’s physical, mental, and emotional well-being, while receiving an accurate diagnosis can allow the patient and their family to move forward with a focus on managing future challenges.

With:

William A. Gahl, M.D., Ph.D. (National Institutes of Health, Bethesda, MD)

Jean-Louis Mandel, Ph.D. (The French Foundation for Rare Diseases, Paris, France)

Anne O’Donnell-Luria, M.D., Ph.D. (Broad Institute and Boston Children’s Hospital, Boston, MA)

Sean Sanders, Ph.D. (Moderator ; Science/AAAS, Washington, DC)

This podcast was adapted from a webinar launched by Science Magazine with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

The science of incarceration- A realistic look at the cost of imprisonment

Fri, 02 Apr 2021 13:56:48 +0000

When a person commits a crime and is incarcerated, they are displaced to an environment that in theory should be designed to effect long-lasting behavioral change whereby criminality does not recur. But is this the reality? When a human being is forcibly detained, what are the impacts on their behavioral and mental health, their physiology and neurochemistry? What can we learn from the science of incarceration that better informs us about crime prevention and recidivism reduction? What can studies on incarceration teach us about how people respond to their environments, good or bad? In this webinar, the expert panel will tackle these difficult issues that compel us to examine how society’s need for redress can be balanced with our moral obligation to treat all human beings with respect and dignity.

With:

Nazgol Ghandnoosh, Ph.D. (The Sentencing Project; Washington, D.C.)

Catherine Heard (Institute for Crime & Justice Policy Research; London, U.K)

Jeffrey D. Morenoff, Ph.D. (University of Michigan; Ann Arbor, MI)

Sean Sanders, Ph.D. (moderator; Science/AAAS, Washington, DC)

This podcast was adapted from a webinar made by Science Magazine, with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

From grassroots to 30,000 feet- A discussion on the fate of graduate education

Fri, 26 Mar 2021 14:52:49 +0000

Education, like many facets of today's society, is likely to fundamentally change in the lifetime of Generation Z (4–24 years old). The calcification of expensive universities providing an inflexible learning experience seems unavoidable unless they can transition toward a more flexible, effective, and cost-efficient educational environment. Additionally, the education system needs to better prepare students for a full range of career options, including those outside of the traditional academic track. This webinar draws together educational visionaries to conjecture the future of higher education and its impact on science learning and literacy. Is graduate education outdated and outmoded in the current context? Should tenure vanish? You cannot afford to miss this debate lest you get left behind.

With:
Sherilynn J. Black, Ph.D. (Duke University, Durham, NC)
William F. Tate IV, Ph.D. (Washington University in St. Louis, St. Louis, MO)
Maria Lund Dahlberg (National Academies of Sciences, Engineering, and Medicine, Washington, DC)
Sean Sanders, Ph.D. (Moderator ; Science/AAAS, Washington, DC)

This podcast is adapted from a webinar made by Science Magazine in partnership with Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

7,000 challenges- the basis and burden of rare diseases

Sat, 13 Mar 2021 17:00:00 +0000

Around 7,000 rare diseases have been identified, impacting an estimated 300 million people around the world, about 4% of the global population. Approximately 50% of those diagnosed with a rare disease are children, and 3 in 10 of them will die before the age of 5. Numbers differ across countries, but it is estimated that in Europe, less than 10% of patients with a rare disease receive treatment and only 1% are managed using an approved treatment plan, making this one of the major global health challenges for the 21st century.

This podcast is the audio recording of a webinar made by Science magazine with the support of Fondation Ipsen. It is the first in a year-long series, will broadly examine critical topics in the rare-diseases field, including the causes of rare diseases, the latest research advances and challenges, and the importance of accurate testing, detection, and diagnosis, as well as policy and human rights issues, particularly in low-income countries.

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Money matters- Science entrepreneurship

Fri, 05 Mar 2021 08:40:25 +0000

Barely a decade ago it was almost inconceivable that a scientist could simultaneously conduct science and also own a business based upon that science. These days, entrepreneurship is a major source of scientific advancement as well as a mechanism for gaining personal wealth. Whether you view it as a good or bad thing, entrepreneurship is here to stay as a tool for driving scientific progress. How should we best handle entrepreneurship in science? What mistakes can scientists avoid when starting their business? How can universities and other institutions help scientists to be better entrepreneurs? What funding opportunities are available for startups in bioscience? Despite the potential negative impacts on the pursuit of pure science, many scientists want to become entrepreneurs, but don’t know how. Whether you are skeptical or curious, this podcast is for you.

With:

Xavier Duportet, Ph.D. (Eligo Bioscience/Hello Tomorrow, Paris, France)

Janice Limson, Ph.D. (Rhodes University, Grahamstown, South Africa)

Bernhard Paetzold, Ph.D. (S-Biomedic, Antwerp, Belgium)

Sean Sanders, Ph.D. (moderator ; Science/AAAS, Washington, DC)

This podcast is the audio recording of a webinar made by Science magazine, with the support of Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

Engaging citizen scientists- Will the walls of the ivory towers come tumbling down?

Wed, 24 Feb 2021 14:16:09 +0000

This podcast was adapted from a webinar recorded by Science Magazine, with the contribution of Fondation Ipsen.

Science is meant to serve and advance humanity. For more than 200 years, however, it has been conducted only by scientists, making it the domain of the highly (some might say over-) educated. An exclusive club, science is most often cloistered in the ivory towers of academia. While some argue that this exclusivity is critical for the success of science, we also live in a world where openness and accessibility are increasingly valued. Yet accrediting members of the public with the label “scientist” could be viewed as a threat to the closed system that keeps scientists in their privileged position. Fortunately, optimism has won the day as the scientific community, through the power of the Internet, has begun to embrace members of the public as scientific partners. Citizen scientists have been engaged to measure bird migration, the proliferation of plastics pollution, and disease outbreaks. As a scientist, are you afraid of competition from members of the public? If you are a member of the public, would you like to join this movement? Listen in as a group of citizen science gurus discusses its pros and cons. Together, let’s change the world for the better.

Panel:

Chris Lintott, Ph.D. (Oxford University, Oxford, UK)

Renata van der Weijden, Ph.D. (University College Roosevelt, Middleburg, The Netherlands)

François Taddei (Center for Research and Interdisciplinarity (CRI), Paris, France)

Olivier Le Gall, Ph.D. (INRA Bordeaux, France)

Sean Sanders, Ph.D. (Moderator; Science/AAAS, Washington, DC)

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Impulses, intent, and the science of evil

Tue, 16 Feb 2021 13:59:04 +0000

There is a tacit assumption when it comes to the value of science: that it serves to improve the human enterprise. As humans, we believe that our fellow beings are predominantly motivated to do good. However, science has been used to design weapons of mass destruction and effective methods of torture. Furthermore, numerous investigators have dedicated their lives to the study of evil and what motivates bad actions. Can research into humankind’s most destructive inclinations help us become better people? In this webinar we examine the science of evil. We attempt to unpack the nature of evil and ask if we can eliminate it or whether indeed, we should. Does a science-driven adjustment of society toward good represent an exercise in social redesign that contravenes the essence of humanity—the constant struggle between good and evil? Can science act as an antidote to wrongdoing, or is it only a tool to be exploited by those who master it?

With:

Gary Brucato, Ph.D. Columbia University New York, NY

Abigail Marsh, Ph.D. Georgetown University Washington, DC

Michael Stone, M.D. Columbia University New York, NY

and Sean Sanders, Ph.D. Science/AAAS Washington, DC (moderator)

This podcast is adapted from a webinar organized by AAAS-Science Magazine and sponsored by Fondation Ipsen.

Hosted on Ausha. See ausha.co/privacy-policy for more information.

You can’t think outside the box if you’re locked inside it

Thu, 28 Jan 2021 13:17:32 +0000

This podcast was extracted from a webinar that Fondation Ipsen organised with Science Magazine with the aim to gather international scientist to discuss a key issues for society.

Diverse perspectives make science stronger. Science relies upon the intellectual capacity, curiosity, and creativity of human beings to explore our natural environment, seek answers to difficult questions, and improve people’s lives. The variability found in nature and across the planet is unmatched by the diversity of thought within the science caucus. But if scientists are not representative of humanity, how can they represent society? Does the scientific workforce in fact match the world population in terms of race, gender, socio-economic status, sexual identity, and disability? What can the data teach us? What is the impact of homogenous scientific thought on diverse world challenges? If science is inaccessible to certain groups, how can it serve all people? How can science develop a more diverse workforce? In this webinar we examine the shortcomings of scientific thought resulting from the biases of those who do it. More importantly, we seek solutions to better represent the ideas, countries, wealth variances, cultures, identities, and beliefs in the global laboratory of the future.

Panel:

Charlene Le Fauve, Ph.D. National Institutes of Health Bethesda, MD

Mathias W. Nielsen, Ph.D. University of Copenhagen Copenhagen, Denmark

Jon Freeman, Ph.D. New York University New York, NY

Angela Byars-Winston, Ph.D. University of Wisconsin Madison, WI

Sean Sanders, Ph.D. Science/AAAS Washington, DC

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Weaponizing science for the greater good

Thu, 21 Jan 2021 13:00:22 +0000

This podcast is the audio recording of a webinar that we organized with AAAS / Science Magazine.

The scientific method has been successfully applied to advance human health and well-being. The process of experimentation, ethical oversight, and critical review of empirical data enables verifiable truths to be uncovered and knowledge to be advanced. Can the same scientific method also be applied to issues of social justice and human rights? Can we use science to improve the well-being of abused children, to fight racism and hatred, and to stop the spread of fear and ignorance? This webinar examines the practice of applying scientific standards of data collection, analysis, and presentation to further social justice and serve core human rights.

Panel:

Jack Shonkoff, M.D. (Harvard Center on the Developing Child Cambridge, USA)

Marco Perduca (Luca Coscioni Association, Rome, Italy)

Amanda Klasing (Human Rights Watch, Washington, DC, USA)

Cynthia Miller-Idriss, Ph.D. (American University, Washington, DC, USA)

Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Selling without selling out - How to communicate your science

Fri, 08 Jan 2021 12:30:30 +0000

This podcast has been extracted from a webinar created by Science magazine, our partner for this program.

Science is relevant to every person—it is just that many people don’t realize it. The volume and complexity of modern science, and the speed at which nonsense (nonscience) is transmitted, make the dissemination of accurate scientific concepts a challenge. Add Fake Science to the mix and one can understand why the public is confused. This confusion can have dire consequences—mistrust of vaccinations resulting from discredited and retracted scientific publications has caused unnecessary suffering and thousands of deaths, while misrepresentation of climate science has devalued the impact of global warming and its perilous implications. The most attention-grabbing headlines in the media are often about scientists who have dubious motives or have committed ethical atrocities—whether it’s DNA editing of humans, a wholly unscientific chocolate diet, or debunked cold nuclear fusion. To counter such misinformation, scientists need to take the initiative and proactively communicate their science in an accurate and understandable manner. This webinar provides guidance on how to best communicate science to your peers and the public. Stand up and tell the world about what you do. Help everyone understand how science makes society better.

Panel:

Laura Lindenfeld, Ph.D. (Alan Alda Center for Communicating Science Stony Brook, USA)

Alexia Youknovsky (Agent Majeur, France)

Matthew S. Savoca, Ph.D. (Hopkins Marine Station of Stanford University Pacific Grove, USA)

Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Unmasking mental health issues faced by scientists- Addressing the silent pain among us

Tue, 29 Dec 2020 14:24:35 +0000

This podcast, adapted from a webinar co-organized by AAAS/Science magazine and Fondation Ipsen, seeks to address the issue of mental health in the scientific community candidly and openly. It is critical that scientific leadership and mental health professionals recognize that scientists, like all members of society, deserve the freedom to have mental illness recognized and treated without fear of repercussion or stigma. It is essential for the scientific community to show compassion and support to all of its members who are enduring mental illness, from undergraduates to professors.

With:

Jennifer Howes, Ph.D. (California Institute of Technology, Pasadena, USA)

Frederik Anseel, Ph.D. (King’s College London London, UK)

Nathan Vanderford, Ph.D. (University of Kentucky Lexington, USA)

Charles Hoogstraten, Ph.D. (Michigan State University East Lansing, USA)

Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Fighting Fake Science: Barriers and Solutions

Wed, 16 Dec 2020 14:11:44 +0000

This podcast, extracted from a webinar we organized with Science magazine, attacks the issue of fake science head-on, examining what can be done to combat bad science and how good science can be encouraged and promoted. The expert panel will discuss solutions to counteract fake science and explore how the scientific community can better communicate truth over falsehood.

With:

Barbara Jasny, Ph.D (Deputy Editor, Emeritus (Ret.), Science)

Richard Harris, B.Sc. (NPR, Washington, DC)

Ivan Oransky, M.D. (New York Univesity)

Christopher T. Scott, Ph.D. (Baylor College of Medicine, Houston)

Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Finding your way - The science of success

Wed, 09 Dec 2020 14:55:12 +0000

What is success to you? For each of us, what it means to be successful in our work and our personal lives might be very different. Where do we develop our concept of success, and how is it influenced by our environment and culture? How do we measure our success, both internally and relative to others? Do we value money, inner peace, or a Nobel Prize? Do we fear failure? And what price are we willing to pay to be successful? Are we prepared to exchange greater success at work for less time with family?

In this podcast (elaborated from a webinar developped with Science Magazine) we will address these questions with our expert panel, all of whom have experienced success, at least according to some measures:

Njeri Rionge (Independent entrepreneur, Toronto, Canada)

Shruti Naik, Ph.D. (NY University Langone Health, New York, NY)

Darren Griffin, Ph.D. (University of Kent, Canterbury, UK)

Albert-László Barabási, Ph.D. (Northeastern University, Boston, MA)

Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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Put talent first- Practical steps to eliminate gender bias in science

Thu, 26 Nov 2020 10:40:42 +0000

Fondation Ipsen and Science journal/AAAS are patners for an incredible series of webinars, which are now available as podcasts.

This webinar addressed the continuing problem of gender-based discrimination in the sciences. The expert panel examined the efforts being taken by scientific organizations, academic centers, and funding agencies to end gender bias in science. They also considered the cultural changes needed in the sciences to prevent and eradicate discrimination, including moving the narrative away from blaming the victim and excusing discriminatory behavior, and toward community responsibility.

This Webinar last 60 minutes.

With:

Anna Han, Ph.D. (NIH, Bethesda, USA)

Kathryn Clancy, Ph.D. (University of Illinois, Urbana, USA)

Isabelle Collet, Ph.D. (University of Geneva, Switzerland)

Moderated by Shirley Malcolm, Ph.D. (Science/AAAS, Washington, USA)

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Mistakes, missteps, and lessons learned: How we stop the coronavirus

Thu, 08 Oct 2020 17:00:00 +0000

Is your hope fading? Don’t let it. Many are justifiably astounded that this coronavirus pandemic simply will not stop. How can a virus that we understand down to the very molecule still evade public health measures and medicines? Whatever we do, it seems to slip through our defenses. A vaccine will eventually come, but it will take months to reach everyone who needs it. What more can we do to stop the spread?

This webinar accesses some of the world’s leading scientists to explain what seems to be a never-ending list of challenges. But the news is good—we believe we can win by learning from our successes and failures thus far. Tune in to find out the what, when, and how of how this pandemic—and future ones—can be stopped.

With:

Ashish Jha, M.D., M.P.H.

Brown University School of Public Health
Providence, RI

Debra Furr-Holden, Ph.D.

Michigan State University College of Human Medicine
Flint, MI

Caitlin Rivers, Ph.D.

Johns Hopkins Center for Health Security
Baltimore, MD

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Vaccine matters: can we cure coronavirus ?

Wed, 07 Oct 2020 14:22:52 +0000

Top on the world’s want list right now is a coronavirus vaccine. There is plenty of speculation about how and when this might become a reality, but clear answers are scarce.
Science/AAAS, the world’s leading scientific organization and publisher of the Science family of journals, brings together experts in the field of coronavirus vaccine research to answer the public’s most pressing questions: What vaccines are being developed? When are we likely to get them? Are they safe? And most importantly, will they work? Hear from leading authorities from the U.S. National Institutes of Health, the University of Oxford, and the Vanderbilt Vaccine Research Program, with additional comments from Trevor Mundel, president of Gates Foundation Global Health Division.

With:

Sarah Gilbert, Ph.D.

University of Oxford
Oxford, UK

Kizzmekia Corbett, Ph.D.

National Institute of Allergy and Infectious Diseases, NIH
Bethesda, MD

Kathryn M. Edwards, M.D.

Vanderbilt Vaccine Research Program
Nashville, TN

Jon Cohen

Science/AAAS
San Diego, CA

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Coronavirus : a survival guide

Wed, 07 Oct 2020 14:11:47 +0000

During the locdown, we reinvented family relationships, work practices, exercise regimens and socialization. This podcast uses the best scientific advice to guide you into this new life. We will examine the current conditions in which we find ourselves, putting our fears into context. We’ll discuss how to adapt to the new normal: spending more time with family, altered personal freedom, and potential changes in our jobs. How can we become more mentally resilient? What will things look like on the other side of the infection peak, biologically and psychologically?

Our world has changed dramatically. There is a growing appreciation for the value of science. Lean on us to learn how best to cope and to rise to the challenge of a new reality.

with:

Laurie Santos, Ph.D.
Yale University
New Haven, CT

Arnaud Fontanet, M.D., Dr.P.H.
Institut Pasteur
Paris, France

Marc Lipsitch, Ph.D.
Harvard University
Boston, MA

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