Author Krista Tibbs

Archive for the ‘Integrity & Freedom’ Category

Cyber Disinhibition

In Commentary, Integrity & Freedom, Science on January 9, 2010 at 3:45 pm

Today is the last day of my first year of blogging! Of course, when I included kittens in the title of the first post, I didn’t foresee that by the end of the year the kittens would actually be writing the posts.

The reason Spunk and Teddy have taken over recently is that months ago, a stranger left a drive-by comment that was judgmental and personal, and it has bothered me ever since. As my mother so wisely, if not sympathetically, said: If you’re going to put your thoughts out to the world, you have to be prepared for any response. So I guess all this time I have been trying to figure out if I am – or even want to be – sufficiently insensitive.

It wasn’t until someone else left a hateful post yesterday under Spunk’s Christmas pictures that I realized it may not be my problem. Call me judgmental, too, but surely there is something wrong with people who feel the need to treat the world like their own personal litterbox and leave droppings of meanness wherever they go.  I mean, what’s to hate about a kitten at Christmas?

Imagine my excitement when I found out it is a neuroscience issue! The technical term is cyber disinhibition, which is basically when people say things online that they would never say in person. The neuropsychological explanation is summarized in this great post by Daniel Goleman, the author of Emotional Intelligence.

The impact of cyber disinhibition is illustrated in a poem written by James W.  Foley, something I copied into my journal 20 years ago, before I ever heard of the Internet. Below is an excerpt; the full poem can be found at http://www.ripplemaker.com/pebbles.htm

Drop a pebble in the water:
just a splash, and it is gone;
But there’s half-a-hundred ripples
Circling on and on and on,

Drop an unkind word, or careless:
in a minute it is gone; 
But there’s half-a-hundred ripples   
circling on and on and on.     
They keep spreading, spreading, spreading       
from the center as they go,         
And there is no way to stop them,            
once you’ve started them to flow.              

Drop an unkind word, or careless:
in a minute you forget;
But there’s little waves a-flowing,
and there’s ripples circling yet,
And perhaps in some sad heart
a mighty wave of tears you’ve stirred,
And disturbed a life twas happy
ere you dropped that unkind word.

 

So, I’ve decided that from this point forward, disagreement and a good debate are welcome as always, but I will delete nasty pointless commentary, because it’s a waste of emotion and there is no need for that kind of thing to be out in the world.  And I will also try to remember:

  Drop a word of cheer and kindness:
just a flash and it is gone;
But there’s half-a-hundred ripples
circling on and on and on…

Example of Excellence: Firecrackers Jump Rope

In Being Human, Commentary, Integrity & Freedom on October 24, 2009 at 3:19 pm

A friend of mine forwarded me the video below of a team of 4th-8th graders who do amazing things with jumpropes.  It’s worth watching all the way to the end, evidenced by the increasing amazement on the faces of the audience at the Naval Academy, who are no strangers to precision.  

In order for these 9-13 year-olds to perform their jaw-dropping show, every single one of them has to excel individually while also being a tight-knit team, and they have to put in a lot of work to do it. According to their website,  these Firecrackers from Kings Local School District in Ohio practice 2 hours a day, 5-6 days a week. That’s an inspiring example of commitment, but what’s even better is that their performance is infused with fun and pride, the greatest symptoms of excellence.

Kudos to these kids and to their coach, Lynn Kelley.

Personalized Health vs. Mandatory Preventive Insurance

In Commentary, Integrity & Freedom, Science on October 8, 2009 at 2:26 am

Every day, science is moving us closer to personalized health based on our own genetic makeup. The government is actually part of this progress – http://www.hhs.gov/myhealthcare/ – which is why I’m a little stymied by the concept in the health care bill of having a Health Choices Commissioner in Washington, DC deciding on a one-size-fits-all insurance coverage for preventive medicine. I’m not talking about catastrophic coverage; I’m talking about the preventive components defined as essential basic insurance, which currently includes at minimum the items in the Task Force for Clinical Preventive Services grade A/B  – e.g., HIV screening, tobacco prevention counseling, and aspirin – as well as vaccines, maternity care, well baby and child care, oral health, vision, and hearing services.

Every law-abiding U.S. citizen will be required to purchase this level of insurance, which necessarily takes away choice in a very simple way. Consider the two scenarios below:

Scenario 1

 Lila works at the computer 8 hours every day at her primary job and another 3-4 hours every night for her second job. So her risk for repetitive strain or related injury is nearly 100%. She had numbness in her hands and a physical therapist recommended her to get regular massages to reduce the strain in her neck and back, on top of the stretches and exercises for her arms and wrists.

She suffers from anxiety and depression, or what she views as just plain stress, which contributes to her weight and her blood pressure, which are of course contributing factors to other potential health issues. Exercise and meditation keep the symptoms at bay enough so she can avoid prescription medications and their known and unknown side effects. But it’s a vicious circle that makes it difficult to keep up a regimen without an external commitment.    

Finally, based on information that she has read in reputable medical journals, she believes that pesticides and preservatives may increase her risk for health issues suffered by others in her family. So when she has extra money, she chooses to shop organic.  

Lila is otherwise healthy. Due to a bad experience in the past, she hasn’t been to the dentist in 15 years, choosing instead to take meticulous care of her teeth, such that she doesn’t have a single cavity. She has no intention of ever getting a cervical exam; she has accepted the possible consequences. For minor maladies, she prefers home remedies to going to a doctor.  

So with her limited budget, she has chosen catastrophic insurance with a high deductible,  to cover any huge unforeseen circumstances. This has the lowest premium so her health budget can include periodic massages, organic food, dance lessons, and books on holistic medicine.

If the current health bill passes, she will surely pay a higher premium because her required coverage would include universal preventive care such as dental visits, gynecological exams,  and other screenings that she will never undergo. Instead, she will have to forego some of her personalized health choices.   

 

Scenario 2:

Bill has recently discovered that he has the gene for ALS. There is no treatment for ALS.  Although it is not certain he will develop the disease, he has already started to experience the same early symptoms that he saw his father and brother go through.  He would rather die of a heart attack or a car accident or a hundred other common maladies, so he has decided that he will exercise what little control he has and never go to the doctor or the emergency room again. He has filled out the paperwork and his wife has agreed. Yet to be a law-abiding citizen, he will still have to pay for the government-mandated health insurance instead of putting his money toward long-term disability insurance or a daily living fund for his wife after he becomes disabled.

His wife is barren, so fortunately they don’t have to worry about their children inheriting the gene. But she will still have to pay for insurance that covers maternity care, well baby, and child care rather than grief counseling.

 

Both of the scenarios above are real people. I’m sure you know others. In fact we could come up with a real-life scenario every day for the rest of the year in which mandatory preventive insurance will directly trade off one individual’s personalized health choices in favor of someone else’s general preventive care. Whether intentional or unintentional, the consequences are the same, and deeper than the surface of the bill.   Again, this isn’t about the part that keeps people from going broke if they get sick; this is about the scope that extends beyond catastrophic care and pushes the boundaries of freedom.

We Don’t Always Get What We Deserve

In Being Human, Commentary, Integrity & Freedom on October 2, 2009 at 3:43 am

     This afternoon someone mentioned college acceptance letters, and a shiver ran through me – a good one. I remember the day years ago when I came home from school to find my acceptance letter for MIT. I can still feel the paper shaking in my hands, see the Congratulations swimming on the page, and recall where everyone was positioned in the living room, including my grandfather with his bewildered expression as I screamed unintelligibly, “I got in!” and jumped up and down then ran out of the house to go back to school to tell Mrs. Wilbur, my math teacher.

     It isn’t often that you get to experience 17 years of hard work coming to fruition in a moment. Because there is no guarantee that 17 years of hard work are going to bear fruit at all. People don’t tell you that when you’re a teenager. “Life’s not fair”, sure. “Things will be different in the Real World”, definitely. But never “You could study your butt off and work your fingers to the bone and still end up with a job you hate, or no job at all.“

     Everyone figures it out eventually, of course. When people would ask me where I wanted to go to college, I always said “MIT, but I’m not sure I’ll get in.” Because it wasn’t all up to me. In the Real World, there are plenty of Simon Cowell types who take every opportunity to tell you how hard it will be to succeed. I went to a Writer’s Digest conference a couple of weeks ago and came home with a lot of new ideas, plus the recurring theme that a person could write the greatest American novel of this century, but it doesn’t mean anyone will read it, because there is way more to being published and bought than just content.

     This could be discouraging, and it is on some days. But it’s also good to know, for planning purposes. I’m now figuring out a way to enjoy my day career so I’ll be prepared to spend many more years doing writing and marketing as just a hobby, on my own terms. (If you want to encourage my hobby, join my author page on Facebook! =))

     So, I’m interviewing for a job right now that I really want, that would make use of every varied experience I’ve chosen since that college acceptance. There are many possibilities in the role, and I have many ideas for it, but also butterflies about the obstacles being bigger than I am and crazy thoughts that I might welcome the challenge. In a way, I’m back to being 17 and knowing I’ve done everything in my power to earn what I want but my immediate future is in someone else’s hands. My head knows my value, but my heart is still not sure I’ll get in.

     I do have several contingency plans. That’s one good thing about feeling 17; a lot more options seem open. But being in my 30s, I know something better; that we don’t always get what we deserve — and it’s a mercy sometimes!

Shades of Twilight

In Being Human, Commentary, Integrity & Freedom on July 28, 2009 at 3:48 pm

On Twitter the other day someone said to me that drugs are dangerous and asked why I choose to work in the pharmaceutical industry rather than an industry that works to heal. I’ve been thinking about it a lot, wondering what it’s like to live in a world where there is only night and day: All companies in the pharmaceutical and biotech industry are greedy and evil and dangerous, therefore all people who work within those companies are misguided. Any academic research or alternative medicine is pure and safe and good and selfless. If only all science, religion, and politics were so clearly delineated.

 

I live in a world where there are shades of twilight. I know what my Twitter follower said isn’t true of me or my company. I know that we have developed treatments for people who would have died and now live. But I also know that not all companies in the industry have that same mission and that good nutrition and exercise can take the place of drugs in many cases. It’s the same way I know that all politicians aren’t self-serving — but some are.

 

I think the source of a lot of the tension and frustration in the world is not good vs. evil, but just twilight people and night/day people trying to have a conversation. In general, night/day people hear either agreement or criticism and react accordingly; either you support them or are intentionally trying to impede their good intentions. Twilight people get their hackles up when their comments get categorized this way or they feel pressured to make all-encompassing statements in order to defend their position, which is frustrating because they know most statements are only true some of the time. Many people can switch types, depending on the issue. For example, I’m usually twilight, but when it comes to planning, it’s all night and day: more planning is always better. =)

 

I think there is necessity for both in the world.  Twilight people can take longer to move forward, because they see the merits of many sides of an issue and need to resolve them, which causes progress can zigzag. Night/day people forge straight ahead because they’re so very sure of their position. What is critical is that we acknowledge these two types of people exist, try to see the good place they’re coming from, and recognize when a situation calls for one approach or the other – meaning to acquiesce when necessary. I think our current president is a night/day person, and so far, I’m not convinced that he sees the merits of twilight, which makes it hard for me to accept his forging forward. But he’s learning as he goes, so I’ll keep watching.

 

As for my Twitter follower, I’m still perplexed at her one-sided perspective on drugs. She had cancer, got chemotherapy, and lived to tell the tale. She would rather have had adult stem cell therapy that used her own cells to heal herself, which I can understand, of course. But until adult stem cells are proven effective that way, isn’t chemo a twilight between life and death?

What Would You Wish You Had Done Before You Died?

In Commentary, Integrity & Freedom, Original Fiction on June 20, 2009 at 5:43 pm

    Last night I watched the movie Fight Club, which is based on a book by Chuck Palahniuk.  I posted previously about having put Chuck Palahniuk on my reading list for a variety of reasons, but I thought he was pretty far down the list; it’s hard to imagine someone like me who loved Jane Eyre could also appreciate anything described as “graphic and horrific” or that publishers rejected for being too disturbing to print.  However, a couple weeks ago, I had found myself without reading material at the airport so picked up Diary and devoured it on the way home. As I said in my review on Goodreads, the writing made me jealous.

     So, while I don’t usually enjoy gorey or violent movies, when I saw Fight Club was on TV, I stayed up to watch it. I can’t say I’d recommend it for everyone, so click on the Diary link above to get a review in general of Palahniuk’s style.   Today’s post isn’t really about him anyway, although it seems to have started out that way, doesn’t it?

     Where I meant to go is toward the question one character kept asking people in the movie:  “What would you wish you’d done before you died?” It reminded me of the thought that popped in my head during a bout of bad turbulence: if the plane goes down, it’s a shame, because I always wanted to write a book. (Then I remembered, I already did!)

 
     But when I asked myself the question after the movie last night, the response was a blank. Because it’s not quite the same as saying I always wanted to see the Swiss Alps or go on an African safari; it’s less what you want to do but more what you want to make.

     I considered the idea that I always want to make people smile, to make the world a little better; after all, I do believe in the Emerson quote I have on Facebook. But it was a little too fluffy and vague for the me who is specific and concrete. I tried on the concept of leaving a legacy through my kids, because that’s heart-felt and noble. But it didn’t fit right for me. (Yes, thank you for pointing out the fact that I don’t actually have kids; this is a hypothetical…) I always try to make life a little easier for other people, or so I thought,  but I realized that isn’t quite true; I just try to help remove or at least not become one of the obstacles that distracts a person from his or her primary load. Because all people have a burden that they spend their whole life working through, and in my mind, easy comes after the hard work, not instead of it.

 
     And then it occurred to me: the one thing that is a driving force in my work life and my personal life and is a thread through many of the posts on this blog is that I want to have made people – and myself – think before they decide. It’s not the decision that matters so much as the thinking. Even when I’m having a discussion with someone else and I have a strong opinion, be it politics or religion or science, I accept that it is possible to reach a different conclusion with the same information. But what I can’t accept is when I believe the conclusion was reached without an understanding of different perspectives or facts.

      The two things that had me riled up this week were 1) that ABC News was planning a prime time special with President Obama on his health care ideas, without alternate perspectives in the coverage (changes are in the works for the program so if I’m still riled up later this week, I’m sure I’ll post on it!); and 2) the constant criticism of how President Obama swatted a fly.

      It’s too easy to either just agree with everything or just disagree with everything a person, party, or organization does. It’s much harder to sort through the ideas and figure out which have merit based on their content, regardless of who presented them.  The point is first to have access or be open to the alternate ideas. And any idea, to be successful, must stand up to scrutiny.

      It’s also too easy to just feel everything and not think about it — or to think and not feel. This is especially true when it comes to faith, because in the case of faith, “thinking” is as much pondering in your heart as in your mind; humans were born with the unique capacity to reason as well as love. But that is a post for another day.

      The point today is that part of me is at peace, because I think I have found my answer to why I’m here – to make people uneasy. =)

 

 So, what would you wish you had done before you died?

Quotes about the Road Less Travelled

In Commentary, Integrity & Freedom, Light Menu on May 4, 2009 at 12:07 am

I’m encountering some mental exhaustion, and since I rarely say anything that hasn’t been said before, I thought today I’d just skip the middle man.

  

It’s kind of fun to do the impossible.

Walt Disney

 

Even if you are on the right track, you will get run over if you just sit there.

Will Rogers

 

There are two ways to slide easily through life: To believe everything or to doubt everything; both ways save us from thinking.

Alfred Korzybksi

 

The reasonable man adapts himself to the world; the unreasonable man persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.

George Bernard Shaw

 

In the beginning the Universe was created. This has made a lot of people very angry and been widely regarded as a bad move.

Douglas Adams

 

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Medical Research – Perspectives from Academia and Industry

In Commentary, Integrity & Freedom, Science on April 25, 2009 at 8:57 pm


Updated 01 May 2009

My day job is managing clinical research in the biotechnology industry, and my cousin Mark is a microbiology professor. I think it’s safe to say that we both care about our contributions to science, but we haven’t taken the chance to discuss our different views on medical research around the buffet at family Christmas parties. So when we started a conversation in the comments a few days ago, I thought it would be interesting to finish it up here on the main blog, because he has raised some points on which I’m not sure yet where I stand. And where better to figure things out than on the Internet in front of the world? Or at least in front of the 12 people who read this blog. =) So over the next several days we’ll be posting some stream-of-consciousness back-and-forth about a variety of topics related to scientific research. Feel free to comment with your own viewpoint.
 

 


Mark (April 23):


A very large portion of science research funding must come from the government. There is tremendous danger in allowing the markets to drive the direction of basic research as it is often too short sighted to see the potential value of research that may not bring something to market for many years, and in many cases, never.


I resist the concept that decisions on funding meritorious research could be done by people without the highest level of understanding in the field. Such non-peer reviewed research leads to ideologically biased outcomes. I don’t know your views on stem cell research, but these types of controversial research endeavors may suffer as people are frightened away from supporting something others, especially religious leaders have denounced. Also, the private sector will never fund significant research into valuable areas of the basic sciences that it views as superfluous, but adds in unappreciated ways to the quality of science and education (I have a colleague who studies the ecology of mites in ephemeral water filled cavities of plants – pretty arcane sounding, but a great experimental system for ecological studies that ultimately drive models for larger scale ecosystems).


Private donors, no matter how angelic, will never be able to fund truly important research projects to appropriate levels and for the length of time necessary to see significant progress…


Regarding government’s ability to spend money wisely; while there are certainly many examples of wasteful, bureaucratic agencies, the feds don’t get sufficient credit for agencies like… NASA, NIH and NSF. There are undoubtedly problems in these examples too, but painting the government as incapable of serving the public good in such expenditures is too extreme.

 


Krista (April 25):
I understand the concern that the markets are often short-sighted, however, I believe they have become so because of the unbridled and unpredictable government regulation. If government regulation were limited such that companies could plan far into the future, or if there were no competition from government to fund projects, there would be a natural development of a market for long-term research. Its very value is in the fact that not everyone can see its potential benefit. Investor companies would compete to fund basic research for no specific purpose, with their expertise being to find the next company to value whatever was discovered in the lab. So in one case, that next company’s expertise may be in animal studies, and they would be able to sell to inception pharamaceutical companies who do Phase I clinical research, then at that point the product would be derisked such that industry would compete to finish development. Or in the case of your colleague, that next company might specialize in application of ecological technologies in industry and see the potential of your colleagues experimental system, so they purchase it and develop it with a specific aim and sell to a company that wants to differentiate itself by incorporating green efficiencies but wouldn’t otherwise have invested in the risk of research from scratch. In both scenarios, an infrastructure for long-term development is built, so there isn’t reliance on one source for long-term funds.

Yes, NSF and NASA have been consistently the most efficient and accountable of government organizations. That’s one thing I remember from my days at OMB. But ironically, it’s because they are under constant scrutiny because of questions of whether they are truly critical government functions!

I would have to disagree regarding NIH, however. Because 6 or 7 years ago, NIH was measuring their performance based on how many dollars they sent out the door, without any measure of the quality of the decision or the research being funded. I agree with you that the decisions to fund research should be made by people who actually understand the field, which is exactly what makes me to want to get it out of the reach of politicians. Although accountability it better now than it was 6 or 7 years ago, as long as the funding comes from government, the more meritorious research has the potential to be shortchanged in favor of a politician’s pet project. While the free market has its own issues, it at least values expertise more than ideology. I think stem cell research is a good example of this. Research on stem cells and gene therapy and other innovative science has carried on in the private sector despite the controversy in the government-funded research; only its profile has been impacted by the public, not its progress.

 

 


Mark (April 27):


I feel one major pitfall of investor-based or industry-based research is the frequent lack of transparency. Too often corporate decisions to allow the free, unfettered exchange of scientific ideas, data and results hinders science. Scientific research is a very incremental endeavor;each person or lab often adding a small piece to the larger puzzle. If these small pieces are not put out for all to critique or build upon, progress slows. The very industries you feel are being forced to compete with the government to fund projects, benefit from the federal investment in basic research as a condition of federal funding is the free exchange of results and reagents. Allowing groups of non-scientists to decide these advances are best kept in-house to preserve future profits works against the very principles of scientific advancement.

Another danger of relying too heavily on private or corporate driven research, rather than federally funded research is the issue of protection. In the review of research proposals to federal agencies, there are protections in place to protect against abuses and excesses of both human and animal subjects during research. Federally funded research is subject to sunshine laws to make it easier to see the nature of the research taking place and that adequate protections are in place. There is simply too much potential for these protections to be weakened in industry conditions. The secretive nature of industry can hide aspects of research that need the sanitizing effects of sunlight. While I firmly believe that the vast majority of researchers and administrators in all areas of research are ethical, the potential for abuses due to pressure for success (academic or market-driven) are immense and must have strong regulatory apparatuses attached.


Before defending the NIH, I must disclose that my research is funded by the National Institute of Allergy and Infectious Diseases, one of the National Institutes of Health. I have been funded in this way since 2003, and appear to have secure funding from this institute until 2012, so you will understand if I have some significant bias for this agency!!
I think you are mistaken regarding NIH’s evaluation of success as simply the dollars out the door. Those dollars are directed toward proposals that have already had significant preliminary progress reflecting research efforts often giving “proof of principle” results. Few grants would ever be funded without such evidence of potential success and grants are not renewed without proof of success measured largely in manuscripts published. The NIH requires free access to these experimental results so that all can use the results to prevent others from reinventing the wheel or to allow others to build on these results. There are periodically politically-driven decisions regarding an ear-mark in the budget for the research of an important constituency for a politician, but I believe (hope!) this is a small percent of typical NIH budgets

I think a basic misconception of the value of research to society in general lies in a belief that the outcome is solely a tangible or marketable product. I am just back from a trip to UNC Chapel Hill. I was brought there to speak by an NIH funded research-education initiative called SPIRE. This program takes bright young recent Ph.D’s that are interested in research AND education careers and funds them for three years, one of which is spent as an educator at a minority serving university in the UNC system. The project is a wonderful concept as the fellows in the program can do high level mentored research on NIH sponsored programs, but also serving under-served populations to help bring more minority students into the fields of science. The success of programs such as these is not measured by results in scientific papers alone. It has societal impacts many years down the road on both the SPIRE fellows (by the way, the most remarkable group of young people I’ve met in some time!), but in their future research/teaching careers and in the potential successes of their students. While I have no doubt that some private funding sources would love to fund projects such as this, the sums of money involved in a project such as this (and there are 11 or 12 similar NIH funded programs throughout the US) are immense and little benefit returned to an investor funding source.

When I think about how I personally measure the success of my own research, it is the outcome of the students involved that is most important (although papers are nice too!). This is not an unintended consequence of NIH funded research programs. In fact, it is a primary point of many of their funded proposals!

 


Krista (May 1):

Secrecy around intellectual property is not at all the same as secrecy around animal and human protections. The medical pharmaceutical industry is the most regulated of all industries with the possible exception of the airlines. We are subject to the only laws in the entire legal code under which the accused is assumed guilty unless proven innocent. We are also subject to FDA surprise inspections; shareholder ethics standards; approval and regular reporting to institutional review boards and bioethics panels and radiation committees, etc at every location where partnering physicians enroll patients; strict reporting and analysis of any and all adverse events which occur on our studies – whether or not product-related. So if a patient gets a cut in a car accident, even if she was just riding in the passenger seat, we have to report that she got stitches, the severity of the cut, and what action was taken for it. We are beholden to Good Clinical Practice (GCP), Good Laboratory Practice (GLP), the Declaration of Helsinki, and International Committee on Harmonization in research. I could go on.

 

But I share your concern about corporate research having the motivation to keep science proprietary, moreso than academic research. However, I would like to believe that the same reason you mentioned — that science is advanced through free exchange of information — would be the very thing that would break down the silos if we had investor-funded infrastructure (which could be corporate or non-profit).  For-profit and not-for-profit organizations both would find a way to share information for the sake of speed in progress. 

 

It’s interesting that you should talk about the SPIRE education program, for 2 reasons. One is that the SPIRE program has close ties to the the Training Initiative in Biomedical and Biological Sciences – TIBBS! =) The other reason is that I just returned from an “Evening of Hope” fundraiser for the Biomedical Sciences Careers Program, which sounds like a similar program, except funded solely by private sources for 18 years. The fundraiser raised $350,000 (after administrative costs and scholarships). My company also provides mentored internships for these students to work with scientists in their field. The companies like ours that are long-standing and solid are the ones that do not focus on immediate return on investment. 

 

But your point about the magnitude of dollars is well-taken. It looks like the average SPIRE-type grant is $150,000 per year, and there are thousands of them, close to a billion dollars total. That is where my angst starts.  If we have a billion taxpayer dollars a year to fund research, shouldn’t we have more to show for it in terms of public health? According to the performance report, “The National Institutes of Health (NIH) is established to encourage and support research, investigations, experiments, demonstrations, and studies in the health sciences related to the maintenance, detection, diagnosis, treatment, rehabilitation, and prevention of human disease and disorders.” What was the last disease we eradicated?

 

The one thing corporate research does is to focus funding and drive science with a clear clinical goal and a sense of urgency. The government did that with polio, so research doesn’t have to be excruciatingly slow and incremental, but as far as I know, that was the last concerted federal effort followed to a clear end. It was arguably true federal role because it was a public health emergency. So to me it’s a question of where to draw the line, because I’ve also stated in a previous post that there are ethical issues with politicians setting priorities on which diseases to address.

 

My main concern is that there is no line drawn at all and dollars are spread so thin that the people who donate the tax dollars will never see the benefits of it in their lifetimes.  So I think it is wrong to make statements like “your tax dollars are being used at NIH to save lives”, because such a simple statement inspires a fear and hope that one of those lives saved might be your loved one. Such a statement keeps people from questioning the endeavor. But the truth we should be telling based on what you’ve described is that we’re using your tax dollars to possibly lay the groundwork that could be used to save your children when they’re adults or your grandchildren, but we don’t have any clear intentions to that end; some of the money might be used on education for people who might one day contribute to laying such a groundwork. Those might be fine intents, but per our Constitution, it is up to the taxpayers to decide through their elected representatives whether that is a critical federal role that every person should have to to contribute to, or whether dollars for nonspecific long-range research should be handled through voluntary donation and non-government entities.  

  

 


The Last Word – Mark (May 1):

I think this must be my last post in this discussion and I’ll leave the final words to you, after all it is your blog. Thanks for having this discussion; it’s been fun, and I’ve learned a lot. I guess we’ll never see quite eye-to eye on matters of funding basic science and biomedical research in the US.


I’m certainly no constitutional scholar, but I think the part of the preamble that states “… promote the general welfare…” can be interpreted as the founders attempt to ensure a role for our government in the health and well-being of the citizens (others may disagree with this interpretation; I guess I’m not a strict constructionist!).

You pose the question of what was the last disease we eradicated. As a species, the only one I’m aware of is smallpox although hopefully polio is not too far off in terms of eminent extinction. Polio eradication was a wonderful example of concerted, worldwide effort, but polio is a unique problem too. i That virus has no environmental or animal reservoir so it is much easier to eradicate than other infectious diseases that can hide in the environment in some way. However, the list of human disease conditions improved upon that are directly related to funds appropriated to researchers through the NIH or at the NIH itself is impressive (most are unknown to me frankly). But NIH researchers or researchers funded by NIH resulted in the first successful cure for a form of childhood leukemia, the first drug to cure testicular cancer, the identification of the Cystic Fibrosis gene, discovery of the role of asbestos in human cancer, the identification of the first drug effective in the treatment of HIV, the identification of the genes responsible for several forms of breast and colon cancer, the first rubella vaccine and the discovery of the causative agent of Lyme Disease. I think it is not a stretch to say that lives have been saved and lives have been improved and diseases prevented by these endeavors. All in all, I think that the NIH has been a good steward of the the welfare of the US and world population. Undoubtedly there are and will be problems with any governmental institution as large and complicated as the NIH (there are 27 institutes within NIH). Politics will invariably creep in regardless of political party or administration, but I feel that for the most part, funding priorities are established by health experts and scientists. I certainly share your frustration when political motivations enter into science (although you and I would definitely point to different examples!!) However, I still feel the return on the money spent by NIH is more than adequate.

I think a basic level of misunderstanding exists among both you and I. Perhaps I do not have an appropriate concept of the pent up frustration of corporate research America or venture capitalists at being held back from discovery research and the ensuing markets or tax-payer angst over NIH budgets. However, I feel that the research needs of the present time, in basic, non-applied sciences, as well as biomedicine have an enormity that could never be filled by corporate, for-profit or private non-profits. I don’t think the pockets are deep enough and I fear the will is not there long term. Also I fear that important research may be eschewed due to its inherently controversial nature if left to corporations that must rely on investor support.

As in any argument, policy, scientific, or other the answer seldom lies in one argument or the other. The research engine of this nation will ultimately be best served by increased cooperation between corporate and federally funded research interests. In fact, many NIH funds are currently awarded to small business (and possibly large corporations too). And certainly basic science research findings generated by federal funds and published in the public domain contribute to further research successes in the corporate setting. The bottom line is that we need to do much, much better than we have done in the past at developing new knowledge, disease treatments, preventatives and providers. We are too close to many important disease goals to not have discussions such as this one. Although you and I will never agree on this matter, a solution may ultimately lie in between us. Perhaps someone reading our back and forth has some power for change.

Hope to see you at Christmas!


Krista (May 1): 
Mark, thanks so much for this discussion! I appreciate that we can represent the near polar opposites of this issue, because one of my hopes from this conversation was to demonstrate that there are merits to both sides of the issue and our objectives are similar; we just disagree on the way to achieve them. But as you said, the solution is not likely to be found at either pole, rather somewhere around the equator. (I think that’s right; geography was never my strong suit…)


You’ve given me much to think about. Group hug in December! =)

IGive.com and Corporate Stewardship

In Commentary, Integrity & Freedom on April 16, 2009 at 11:38 pm

It’s no secret that I think the private sector in a truly free market can operate more effectively and efficiently than the government. One argument that I’ve received is that people can’t be relied upon to donate their dollars to worthy causes, which is why the government needs to tax us to fund those things. I’ve always thought that argument was a slap in the face of ingenuity and our right to set individual priorities. I’ll give the rights argument a rest for today (!), but I found an example of the ingenuity and wanted to share it.

 

IGive is a website that partners with 700+ stores to fund charities. So if you do your online shopping through this site, the store donates a portion of the sale to a charity – one that you choose. So you can fund causes just by buying what you would normally buy, so your dollars are put to double the use. I think it’s a great idea, and it’s fueled by free market principles of incentive; the stores win, you win, and the charities win.  

 

Something similar happens through my book website, where $2.00 from every purchase on the site goes to the organization featured that month. My incentive for doing this is to donate to and highlight my preferred charity as well as to make more on my book. I can do this with books sold on the site, because I get more from the sale. For example, a sale on Amazon nets me $1, but a sale on my website nets me $3.50, so I can donate $2 of that and still come out ahead. I win, the featured organization wins, so it’s incentive all around.

 

Many obscure charities and rare diseases are left to their own devices, which is where ideas like IGive start. So in the absence of a default benefactor (i.e. less government) we would see much more of an infrastructure around charitable funding, which would be large volume as well as sustainable because it would be based on incentivized and voluntary – and therefore non-controversial – giving. Already, a number of companies are recognizing that good stewardship is good business; it’s a paradigm that has started to take hold in the last few years in companies that are focusing on longevity and differentiation for investors. For example, the biotech company I work for provides a portion of its medicines free within and outside the U.S., and funds various support organizations for the diseases we treat, as well as community organizations. The company-supported community program I found out about most recently is the Biomedical Sciences and Careers Program, whose vision statement is written around the word, HOPE, because “the individual potential of each student should not be lost or ignored”. I like that.

 

 

My Boston Tea Party Experience

In Commentary, Integrity & Freedom on April 16, 2009 at 3:28 am

I participated in a tea party tax protest today on the Boston harbor. I wanted to share the experience, because I came away with a feeling of hope that’s been lacking recently. I saw that we haven’t reached a lackadaisical point of no return, we aren’t yet frogs boiling alive, and the people who share my point of view are not right wing radicals; they’re regular hard-working and caring people who are just tired of being the silent majority.

 

In the crowd, there were parents with their children who schlepped to the center of Boston because they felt it was important for future generations. One sign read: “How much is the stimulus going to cost me? I’m 9 years old.”  

 

There were workaholics who took a few hours off to find some solidarity with others who don’t think that they are greedy and immoral for being hard workers. Another sign read: “God only requires 10%.”

 

There were people from all political parties, who didn’t share the same policy views, but who shared the belief that it is the responsibility of all patriots, especially elected officials, to uphold the Constitution and preserve our freedom – including the freedom to dissent. Another sign read: “To prevent 1984 we need a little 1776.”

 

I had an incredible sense of pride to be involved, because this wasn’t an angry mob. Which is not to say the protest wasn’t fueled by frustration and anger; but the fuel came from a core sense of principles that were being violated, not an indefinable wrath against the world. So there was a politeness permeating the crowd, a happiness to find others willing to stand up for an intangible – integrity.  We all came for a little bit different reasons: for some the bailouts were the tipping point, for some it was the lack of representation by congressmen who passed a trillion dollars in spending without reading the bills (one baby carriage contained a sign, “I didn’t read the stimulus, either”), and for some it was the loss of freedom in every bill that adds another day of the year to indentured servitude to pay taxes that support others who don’t live by a standard of personal responsibility. Some who were there had lost their jobs and wanted and were working to find anything else, actively trying to avoid the quicksand of government aid. Many of the crowd were sharing job leads, happy to help people help themselves, for the very reason that those people didn’t feel entitled to the help. Another sign read “Socialism = Trickle Up Poverty”.

 

And there was such a patriotic feel to it all. There was no burning of flags or self-hating Americans talking about how horrible we all are as a society. There were veterans in wheelchairs who gave their bodies and some their minds to keep us safe and free (which is more than most of our elected officials have done), and a crowd who appreciated their sacrifice (which is also more than some of our elected or appointed officials have shown).  It was a group who wants to preserve what makes our country unique and great; to avoid the path that so many other countries in history have taken – at least not without a thought, the truth, and a fight. It was a group of people who are proud of our Constitution and are tired of hearing others dismiss or apologize for it.

 

My own personal reasons for attending were to contribute to the message that we need to stop a budget that triples the deficit from passing through Congress. I still have concerns, but I will save them for another day and keep my patriotic glow, at least for tonight.

 

Oh, and I forgot my favorite part, the ending to the protest with a chant of “You work for us!” followed by the entire crowd singing the Star Spangled Banner.

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