Bush: "[Electronic Health Records Must Be] Secure & Private(Except When They Aren't)

The Times warns that Bush administration policy of promoting and supporting electronic health records - promoted by the President under the aegis of preventing mistakes, reducing costs and improving care - is not backed up by the privacy protections the President promised. The times refers to the GAO report which makes this claim:

In the report, the Government Accountability Office, an investigative arm of Congress, said the administration had a jumble of studies and vague policy statements but no overall strategy to ensure that privacy protections would be built into computer networks linking insurers, doctors, hospitals and other health care providers.

... the G.A.O. said the administration had taken only rudimentary steps to safeguard sensitive personal data that would be exchanged over the network. Senator Daniel K. Akaka, Democrat of Hawaii, who requested the investigation, said it showed that “the Bush administration is not doing enough to protect the privacy of confidential health information.” As a result, Mr. Akaka said, “more and more companies, health care providers and carriers are moving forward with health information technology without the necessary protections.”

... Mark A. Rothstein, the chairman of a panel that advises the government on health information policy, essentially agreed with the accountability office. “Health privacy has not received adequate attention at the Department of Health and Human Services,” said Mr. Rothstein, a professor of law and medical ethics at the University of Louisville School of Medicine. “A sense of urgency is lacking.”

Mr. Rothstein said “time is of the essence” because “the private sector is racing ahead” to establish medical record banks and health information exchanges. In December, he noted, Wal-Mart, Intel and other companies announced they were creating a huge database that could store the personal health records of more than 2.5 million employees and retirees. The companies promised they would have “stringent privacy policies and procedures.”

Mr. Rothstein said Congress should not provide more money for a nationwide health information network unless the administration did more to protect the privacy of electronic medical records.

Perhaps medical privacy protections are unnecessary, because after all we are protected by the Patriot Act. That helps ensure privacy, yes?

UN deadlock defeats cloning ban

After a number of delays and much maneuvering and politicking, a deadlocked United Nations has finally defeated a ban on therapeutic (research) cloning. The defeat is a blow to the Bush Administration, which has tried for years to get the international body to throw its weight behind a ban on the technology. While almost all nations support a ban on human reproductive cloning -- cloning procedures that result in a living child -- many nations support the use of cloning technology for medical research. In fact, much of the research goes on in the United States, and a three billion dollar bond issue in California promises to keep the US in the forefront of such research, unless our more conservative Congress passes a US ban.

Illinois is Coming for the Stem Cell Pot, Too

While the national press continues to speculate on what President Bush will do if anything with respect to modifying his 'ban' on Federal funds for embryonic stem cell research the reality is that the battle is for all intents and purposes over. The only issue remaining is which states will follow California and either permit or fund stem cell research. Illinois looks like it is very close to being the next state to work around the Federal ban. - Art Caplan

Bush Science Advisor & the Second Term Critics

Newhouse News Service somehow got John Marburger, the president's science advisor, to comment on the specific allegations of critics of Bush's first (and likely second) term science priorities and alleged allegiances. But his answer is nothing surprising.

William F. May on George W. Bush

William May, recently retired from Southern Methodist University, will speak on the Bush administration's likely position on stem cell research going forward. May, who was not reappointed to the President's Council on Bioethics, is now in residence at UVA.

w-2: Searching for Good News in a Bush Victory

It is difficult to overstate the damage that George Bush can do to the nation's health care and biomedical science in his second term. Long after the shock of a Bush victory - yes, he did win this time - has faded in the minds of Americans, the world will have to cope with this election. What are the implications for medicine and science? Hint: you won't like any of them ... this term, Bush is empowered, under pressure from conservative protestants, and a lame duck to boot.

Kiss pharmaceutical reform goodbye. There is no way George Bush will do any less for pharmaceutical companies than he has done for oil companies. In fact, if anything, the election will draw a more direct analogy between oil and drugs: Bush now has no reason to fear reprisals from those who oppose the drug industry's extraordinary pricing structure in the United States. Bush's cronies may not yet directly profit from the drug industry in the way that they do from Haliburton, but you can bet plenty of Bush appointees are thinking seriously about their future in biomedical lobbying. Pharma will need the President as its collusion with FDA officians and others comes to the fore. Pharma knew what it was buying with Bush, "make no mistake." Any reform effort that included drugs from Canada, including the one Bush said he was "looking at," and any effort to seriously curtail the price of drugs for seniors, will fall prey to the three million vote margin of victory. Drugs will cost more and fewer people will be able to afford them.

International efforts to, well, do anything that Bush opposes are in real trouble. Unfettered international drug research is part of the bargain. Advocates for research subjects have lobbied the WHO and the UN - and those organizations have lobbied the US - to stop the most lopsided and colonialist drug industry research efforts in developing nations. How many research programs in Africa have really rewarded research subjects with any kind of improvement in healthcare quality, even for the disease being researched? Not many.

Healthcare access and insurance reform? Look, no one wants to be pessimistic. Health insurance reform is long-overdue and we in the U.S. have to find a way to provide affordable healthcare to tens of millions of U.S. uninsured. Here's a great Bush solution that lots of Americans seem to support: tort reform! All we have to do is stop those big lawsuits against physicians, and we can save a whole lot of ... wait ... what? Only 3% of the cost of healthcare is in any way related to lawsuits? Ok, wait, so maybe stopping patients from recovering the damages juries want to award them in cases of malpractice won't have much financial effect ... except on physician and lawyer salaries. But Republican voters aren't weeping about that. What they will cry about is the bills that they, and all of us, will have to pay as we watch emergency rooms continue to be the provider of healthcare for the poor, the sick and the legions of uninsured - hundreds of millions of dollars in unnecessary treatment. Those costs have to come out of somewhere. Just watch your premiums skyrocket, guys. Red states will also bleed red ... ink. Maybe there will be a direct correlation between insurance increases and prices at the gas pump! Who knew anything but college tuition could go up so fast?<[> Enough has been written about Bush's war on science to establish beyond question in the mind of anyone in a blue state that Bush, as a final-term president with uniform control of the U.S. government, will be able to quietly support all sorts of insidious efforts around the nation. Just as gay marriage is quietly being outlawed around the nation, look for Bush to lend support of several kinds to state efforts to roll back protection of women's reproductive healthcare. Bush could care less about evolution, but the "intelligent design" movement can rest easy that Oklahoma's new senator and many other new elected officials around the nation are supporters of creationism in the classroom.

There is still one winable battle, although I fear it is not in Ohio or Iowa. The battle is to reform or reject the President's Council on Bioethics. Leon Kass is no doubt gearing up to lead all the President's ethicists for another term of 'moral seriousness'. He must be put on notice that bioethics cannot afford four more years of feckless, xenophobic neocon posturing, even if it is delivered with austerity. Kass should have apologized to the nation for selling the proceedings of his Council through a for-profit, conservative commercial press. He should not have abused the reputation of one of the world's most prestigious biomedical scientists, Elizabeth Blackburn, named by Bush to the PCB and then shown the door under the pretense that she did not attend enough meetings. Blackburn was by all accounts one of the most active participants in the dialog about stem cell research, emailing Kass and others constantly. Kass could not find another way to defend the PCB against the charge that it sat idly by while the Bush administration (or he) fired one of two moderate scholars, and "retired" the other one, replacing both with ultraconservatives. So Kass resorted to distortion and blame in broad public view. To this day he has neither apologized nor attempted any kind of rapprochement with Blackburn or for that matter with anyone more moderate than William Kristol.

The new generation of conservative bioethicists seems dedicated to the proposition that debate is the enemy, or more accurately that opponents are best left ignored. The PCB virtually ignores the bioethics literature in its writing and anthologies. There are passing references to those who agree with them on matters at hand, most noticeably Carl Elliott, but it has become a hallmark of Bush Bioethics that no position is argued by the PCB while there are people 'in the room' with whom one must argue, unless absolutely necessary. This Council must go, or at least be made to play a peripheral role in the bioethics scene, unless it is radically remade with voices from both sides of the aisle. Supposedly even Wesley Smith agrees that there should be such voices. Now it is time for the American Enterprise Institute's Hertog Fellow Leon Kass to act with courage so that we really can have a "richer" bioethics.

It is a pretty terrible day for those of us in bioethics who supported the right to choose, hES research, and dozens of other areas I have not taken the space to discuss. But the real tragedy would be if bioethics did not take from this mess the lesson that not all battles must be fought nationally. State-by-state we will see the new changes made in bioethics-relevant law. California's Proposition 71 is just the beginning of some very important new shifts that deserve some real pragmatic consideration. Bioethics may not be as prestigious when it is fought out in the states, but that is where the battles now lie, at least for four more years. - Glenn McGee (UPDATED 11/3;11/20 )

The Ever-Increasing Misuse of Science UPDATED

Chris Mooney's great piece on the role of pseudoscience ideology in the discussion of scientific problems is just out in Columbia Journalism Review. Mooney highlights several particularly eggregious cases in which "moral seriousness" (the new Bush/Kass pseudonym for "neocon-friendliness") trumps rigorous science, e.g. the abortion/breast cancer link. Simultaneously, Art Caplan saw this piece in New York Review of Books on the same book that Mooney is discussing. NYRB also discussed the Union of Concerned Scientists' own manuscript on the same phenomenon.

Jon Eisenberg on the State of Schiavo: Not Good

The news is not encouraging from Florida on the most significant end-of-life case of the year.

Gov. Bush, the Schindlers and their supporters are now taking a two-pronged approach to forestalling the removal of Terri Schiavo's feeding tube despite the Florida Supreme Court's decision, and so far they have achieved success on both fronts. In the Florida Supreme Court case, Gov. Bush has obtained a 30-day stay of the court's decision in order to to give him time to ask the United States Supreme Court to take the case and issue a further stay. Meanwhile, the Schindlers filed a motion in the trial court asking the judge to hold a retrial on the issue of Terri Schiavo's wishes in light of the Pope's recent statement regarding tube feeding of PVS patients. According to the Schindlers, Terri, who was Catholic, would take the Pope's statement to mean she must remain on tube feeding. The judge denied the motion, citing a prior appellate court determination that Terri "did not regularly attend mass or have a religious advisor who could assist the court in weighing her religious attitude about life-support methods." However, the judge also issued an emergency stay of the feeding-tube removal until December 6, 2004, to give the Schindlers time to appeal this order. No doubt the Schindlers will file an appeal and ask for a further stay from the state Court of Appeal court pending the decision on the appeal. Thus, there are now two temporary stays in place. I think it doubtful that the Supreme Court will take the case and issue a stay, but I think it likely that the Court of Appeal will issue a stay pending its decision on the Pope motion, which will likely last for the better part of a year or longer.

Juv Diabetes Res Foundation Celebrates Bush Signing of Islet Cell Transplant Act of 2004

From their office:

The JDRF Government Relations team is very pleased to announce the Pancreatic Islet Cell Transplantation Act of 2004 was signed into law by President Bush on October 25, 2004. This important piece of legislation passed through both houses of Congress and reached the President's desk thanks in no small part to the hard work of JDRF advocates across the country. Your efforts to educate members of Congress on the promise of islet cell transplantation and ask for their support were crucial in ensuring the bill's success. The Pancreatic Islet Cell Transplantation Act of 2004 will increase the supply of pancreata for islet transplantation and improve the coordination of federal efforts and information regarding islet cell transplantation. The recent progress made with islet cell transplantation is featured in the current Winter 2004 issue of JDRF's Countdown magazine. Thank you for all the calls and visits made, and letters and emails sent in support of the Pancreatic Islet Cell Transplantation Act of 2004. Once again, the efforts of JDRF advocates have translated into tangible results for the more than 1 million Americans living with Type 1 diabetes.

Proposed Protest at ASBH Against Kass

From MCW Today a Proposal to Protest Leon Kass, which comes right on the heels of an international media conversation about how the President is misusing bioethics, an argument made in nature. The protest idea is from Rosamond Rhodes:

Dear ALL,

When ASBH first announced the inclusion of Leon Kass and Francis Fukuyama on the meeting program, I privately voiced my objections. Nevertheless, their spot on the program remained and the ASBH website promotes it as "A notable two-hour Keynote session."

I had considered boycotting the session. I have decided that an invisible protest might allow me the illusion of clean hands, but as a bioethicist I have a moral responsibility to do more.

Professional meetings are usually inappropriate venues fr political action. Yet, the inclusion of the Chairman of the President's Council on Bioethics, on the ASBH program Thursday, 1:15-3:15, is political. I shall be protesting Kass & Fukuyama's positions, actions, and inclusion on the program with silence (NO APPLAUSE). Protest signs (my favorite so far is "SAVE LIVES, CLONE STEM CELLS.") or leaving in the middle of the speech are other possibilities. I invite you to share your ideas in this forum as well.

Yours, Rosamond Rhodes

Rhodes' is accessible by email at Rosamond.Rhodes@mssm.edu. Alex Capron and others have argued that a protest would be inappropriate or unseemly. McGee has replied that a protest is right on target and on time.

Another Op Ed Asks Why the Bioethics Council Head is Stumping for Bush

From Mass High Tech.

MSNBC - Stem-cell research a pawn in election politics

Art Caplan's MSNBC.com editorial on stem cell research is easily the clearest defense of hES research during the election cycle, and has already caused a huge stir among Bush supporters and campaign staff.

The Ethics of George W. Bush

I will admit that I was a bit reticent about a quickie ethics book about Bush and his moral compass. Or perhaps jealous that one can do such a thing once one has tenure, even at Princeton. But an interview of Peter Singer in The Nation concerning his new The President of Good and Evil is pretty impressive, frankly one of the better attempts to put a moral philosopher back on the map of contemporary election-cycle politics.

Schiavo Discussed Around the Nation

In the wake of the Thursday decision by the Florida Supreme Court that "Terri's Law" is unconstitutional, there is a lot of new analysis of this case and its role. The Miami Herald offers a timeline of events in the case itself and an excerpt of the unanimous ruling. The right to life websites are aflame with discussion of appeal possibilities. Wilkes McHugh, the firm that represents Gov. Bush in the case, has the legal documents. The Philadelphia Inquirer writes that there was just no hope at any point after the December 2 opinion of the independent guardian.