08
Dec
15

An Open Letter to Donald Trump

Dear Mr. Trump,

You may (or may not) be familiar with this famous poem from Martin  Niemöller, a Protestant pastor and an outspoken, if tardy, critic of Adolph Hitler and the National Socialists. His lament describes the inevitable consequences of apathy in the face of the slow creep of fascism–creep aided by bigotry and the irrational fear of others.

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Unlike you, Mr. Trump, I don’t pretend to be an expert on the Muslim faith. In fact, I only know one Muslim. I know her because she is the main reason my daughter and others like her have a diagnosis for their rare genetic disorder. I know her because I work with this brilliant geneticist in a joint effort to make sure that all people–regardless of religion, gender or national origin–can benefit from early diagnosis and to provide them with hope for the future because, thanks in large part to her work, we have targets for potential therapies.

In over 15 years of partnership with Dr. Z and her colleagues, the only ‘radicalization’ I have ever seen in her is her eagerness to employ radical new genetics technologies in aid of helping patients faster. I have never–not once–heard her speak a negative word about her adopted country, even as the rest of us lament the idiocy of modern American politics with each election cycle. Unlike you and your followers, she has never suggested or recommended that patients who are Christian, Jewish or of any other faith should be banned from the rights and freedoms guaranteed to all Americans on the basis of their religion. She would find it unthinkable to suggest that any patient, regardless of their beliefs, be denied access to the health services we all take for granted.

So, Mr. Trump, I want to let you know right now that if you come for my friend, I will be the first in line to speak out. If you come for her family, I will be the first in line to stand in your way. If you come for her fellow Muslims, I will be first in line to stop you. I will not, as pastor Niemöller did, regret remaining silent in the face of clear injustice until it is too late. We know better than to let this happen again, even if you don’t. We have had the benefit of history as our guide, even if you refuse to learn from it.

This has got to stop before there is no one but the most bigoted and foolish among us left to speak out.

03
Jul
14

Expected this of Facebook, but PNAS? What Were You Thinking?

Retraction countdown commences now.  It’s pretty clear that Facebook, Cornell and PNAS violated the spirit of human subject research laws, if not the letter of those laws (may have done that, as well).

If we start to accept that clicking ‘yes’ to a privacy policy equals adequately informed consent, we might as well scrap the whole system designed to prevent the research atrocities of the past. Do you feel your physician should be able to replace your standard medication with an experimental drug as part of a study that you are not aware you are participating in and never consented to because you signed his boilerplate privacy policy? Of course not. He/she would end up losing their license or in prison for this sort of conduct. Social science research IS human subject research and it requires the same level of concern for the rights of participants.  I’m not angry about the nature of the study. I am angry that these researchers felt so comfortable manipulating people without their knowledge or consent. It is a slippery slope and minimizing it is not helpful.

People clearly were harmed by this study. In fact, that was actually one of the study goals–see if it was possible to make them feel bad by artificially manipulating their exposure to negative comments– and ultimate ‘findings.’ That alone should have prompted better ethical oversight. This is not the same as retrospectively data mining de-identified static patient records, regardless of whatever rationale Cornell uses. This was real time emotional manipulation of actual people who had no idea it was going on. Bad form all around and I hope OHRP gets involved.

03
Jul
14

(AB)Use of Statins the Next Big Pharma Scandal?

No one can say for sure and that is a scandal in itself.

For anyone who has been paying attention to the growing controversy related to the ever-expanding prescribing guidelines for statins, Ben Goldacre makes some very good points in this post.

Worth noting that none of this would be an issue if we mandated trial transparency. The fact that bad data can be hidden and good data cherry-picked to artificially manipulate prescribing decisions is a big problem that results in lack of confidence across the board.

03
Jul
14

If Quakers and Jehovah’s Witnesses Had Petitioned the Supreme’s

Dear IRS,

I am a lifelong member of a religious order that counts pacifism among the tenants of our faith. This not because we do not love our country, but because we feel the Bible clearly shows (based on our interpretation) that human life belongs to God and taking a human life, for any reason, is an abomination. Even supporting the mechanism to take a life indirectly is considered a sin. So strongly do we hold this belief that we will not serve on juries where the death penalty is a possibility—again, not because we don’t feel some people are worthy of death, but because we feel that decision belongs to God and we will have sinned if we take it upon ourselves.

We are also taught that it is important to obey the laws of whatever land we live in. This means that if we go against those laws, for instance refusing military service during a draft, we must willingly subject ourselves to the legal punishment proscribed by law.

It was with some relief, then, that I heard about the Hobby Lobby decision by the Supreme Court which makes it clear that laws can be subjectively applied to suit religious beliefs. Based on my clearly held religious convictions, I demand to be reimbursed for any portion of my tax payments for the past 36 years that have gone to support the US military in missions that have resulted in loss of life. This violation of my beliefs has created an undue burden for my conscience, which can finally be rectified thanks to the Supreme Court’s decision that federal laws do not apply to people of faith.

If possible, can you provide line item data to indicate how many lives were lost and how they were lost. Just like Hobby Lobby, I demand the right to pick and choose what forms of state-sponsored murder I will support.  Since I don’t object to ALL military loss of life—just loss of life from active military actions, I will still cover friendly fire incidents and unfortunate accidents through my tax contributions–for now.

I would appreciate your attention to this matter immediately, as I am very busy combing through federal laws to see what else I may be exempt from.

Thank you

15
Nov
13

Note to MSM: Some Perspective is in Order

Speaking of stenography, we have this from the NYT’s Michael Shear this morning:

Health Law Rollout’s Stumbles Draw Parallels to Bush’s Hurricane Response (paywall).

Yes. They are exactly the same. Mr. Shear does not add that these parallels are being made, of course, by partisans on the right and that the NYT is dutifully and uncritically transcribing them.

I think Dread Pirate Mixmaster’s response on Balloon Juice sums up the absurdity and lack of perspective quite well:

This was the top story on my NYTimes mobile this morning, and like Michael Shear, I’ve been noting the similarities between these two events. Just outside my window, the bodies of people who haven’t been able to access a website are stacking up in the streets. The lucky who have survived are huddled together in their own filth in hot, overcrowded stinking shelters, waiting to log in.

And well I remember how Democrats worked for years to gut FEMA. Every Democratic governor pushed all disaster preparedness up to the federal government to make FEMA’s job as hard as it could possibly be, and the forty separate votes by the Democratic Congress to defund FEMA are still etched in my mind.

Amen, brother. Way to trivialize the pain and suffering of actual Katrina victims, Mr. Shear. In no universe ever (ever, ever) should complete and utter physical devastation and loss of home and life be compared to temporary inconvenience when accessing a website. It’s called perspective–look it up.

The actual reporting that needs to be done here (you know–‘journalism’) relates to who is making these absurd comparisons, why they are being made and what, if any, credibility they have. Merely transcribing the totally-lacking-in-perspective rantings of partisans without critically evaluating them is stenography. Mr. Shear needs to decide whether he is a secretary or a journalist.

[UPDATE] So the NYTs is not alone. This is an actual meme being pushed by the right. When will someone tell the MSM that the jig is up? We all know how the rightwing media ‘talking points’ thing works now, so why doesn’t the MSM? Why are they more afraid of being accused of liberal bias then they are of actually demonstrating their complete lack of journalistic ethics when it comes to printing any talking point given to them by the right, regardless of how blatantly absurd or dishonest it is?

16
Oct
13

Charles Pierce on the ‘Reign of Morons’

Here is  Charles Pierce (Esquire) with a characteristically dead-on overview of how we got here.  What is missing in all the current hand-wringing/fainting couch analysis by the MSM and moderate conservatives is the historical context for our current situation. This is CUD writ large and it was entirely predictable.

I have yet to see any MSM source point out that the Heritage Foundation, chief antagonist and foe of the ACA, are the people who ACTUALLY WROTE THE ACA.  This plan, that essentially forces Americans to support private insurance companies, was the brainchild of free-marketers and it was specifically adopted by the administration (against the wishes of pretty much every progressive in the country) to avoid a divisive showdown with conservatives. Let that sink in for a moment. Democrats adopted an healthcare reform plan that many found odious in order to prevent a tantrum and the group that actually wrote said odious plan incited a tantrum over it.

There is no way to win with these people. No concessions will ever be enough and attempts to reason with them are pointless. They are missing the components for reason and are a pathologically entitled minority who have no compunction about forcing their will on everyone, in violation of the most basic values of a democratic society.

 

 

18
May
13

None So Blind: The U of MN and Dan Markingson

Yesterday was the ninth anniversary of the death of Dan Markingson, a victim of (at the very least) questionable clinical research at the University of Minnesota Department of Psychiatry. For his mother, Mary Weiss, Dan’s loss must surely be compounded by the knowledge that nothing has changed at the U of MN.  This tragic reality was brought home for me a week ago when I was challenged by U of MN researchers (from an entirely different part of the medical school) about inviting Dr. Carl Elliott to speak to patient advocacy groups about research ethics. They objected strongly to his inclusion on the schedule.  I heard them out–people see things differently and I was interested in their perspective. What bothered me is not that they objected to Dr. Elliott, their fellow faculty member at the U of MN, but why.

This conversation took place in the context of a meeting of investigators who are part of a rare disease clinical research network at NIH. My role in this network is as chair of the patient advocacy group arm of the network, which is focused on patient welfare in the research process, as well as on advocating for research to improve access to therapies. Obviously, there are a number of diverse interests  involved in a network such as this and there can be competing priorities and conflicts of interest. However, the role of the patient advocates should not be murky to anyone.  Our job is to represent the patient interest first and foremost, even it that requires opposition to investigators,  pharma or government interests at times. I assumed this was clearly understood by all.

Which is why it was so odd to have investigators track me down immediately after the meeting to express their concern that I would consider asking Dr. Elliott to speak.  They were crystal clear about where their loyalties lay–‘Dr. Elliott is too anti-pharma and that could jeopardize our current working relationship with ______ .’  They were dismissive, disdainful and made alternative suggestions naming people who have distinguished themselves primarily (IMO) for being ‘ethics for hire’ folks.  One of their suggested speakers is someone who has actually taken the utilitarian ‘bean counter’ position regarding rare disease research, suggesting in writing that it is a waste of funds that could be better used to help diseases that impact more people. Why in the world would rare disease patient groups want such an individual to speak to them (not to mention he was intimately involved in a notorious case of research misconduct involving current researchers in this network)? Why would they assume their deference  to pharma would/should supercede my obligation to the patient groups and, by extension, rare disease patients?

A top-level government staff person involved with the network was present for this conversation.  I was a bit flabbergasted by the position of the U of MN group, so the following day called the staff person to be sure I had accurately interpreted the conversation. I had. It turns out that pharma is essentially controlling the agenda of several of these research consortia in a way that is potentially impeding progress for disease groups that are participating in consortium activities, but whose specific condition is not of interest to  the pharma ‘partner.’ These groups were enticed to participate in a ‘collaborative’ research consortium, only to discover collaboration means accepting whatever research priority pharma dictates.   Researchers have, in effect, surrendered control of their own projects over fear of losing pharma support.  I think most people would call that bullying, yet the researchers from the U of MN seemed completely oblivious to the fact that they had essentially just acknowledged–to a patient advocate no less–that patient interests come second to appeasing pharma.

Happily, most of these consortia have very transparent and productive interaction with their pharmaceutical partners and if other researchers have been threatened with loss of support should the investigators fail to dance to their tune, I am not aware of it. It seems unlikely to be a coincidence that this issue came up with U of MN researchers, however.

The reputation of the U of MN has been tarnished by their handling of Dan Markingson’s case and, if current experiences are any indication, it will not be rehabilitated any time soon.  On the anniversary of this tragedy, my heart bleeds for Mary Weiss and for Dan.




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