Motion Picture Academy To Discuss The Oscars, Academy Members Seem Confused

After an Academy Awards ceremony that seemed to be programmed out of the conviction that the best way to improve the relevance of the movies is to emphasize its most profitable work rather than its most, well, relevant, the Academy of Motion Picture Arts and Sciences seems to have surprised a number of its members by sending out invitations to meetings in three cities to discuss what the Academy does and ought to do. That this is happening seems entirely reasonable and sensible, and so the really newsworthy element surrounding all of this is that Academy members the New York Times talked to seem to be surprised and disconcerted that it’s happening:

In the last few years the Academy, which presents the Oscars, has been the subject of almost constant hand-wringing concerning the quality and ratings of its annual awards show, the age and ethnic diversity of its membership, and efforts to shore up the cultural relevance of film. Still, the group has rarely, if ever, opened the door for a global discussion of its aims or operation. Mr. Koch did not respond to a query about the meeting on Friday, and a spokeswoman for the Academy declined to comment. Several Academy members who have been active in the awards process said on Friday that they were puzzled by the announcement. One highly placed studio executive, who spoke on condition of anonymity to avoid conflict with the Academy, said he believed it was an attempt by Ms. Hudson, who has held her post for about two years, to get input from members as she and others plot their agenda.

I guess it doesn’t necessarily surprise me that the 94 percent of Academy voters who are white and the 77 percent of them who are men might not really want to talk about the fact that they’re an overwhelming majority. But it’s a nice test of how committed actual folks are to their values to see if they’re willing to discuss their privilege and to consider measures that would dilute them. And after the Academy Awards’ schizophrenic pendulum swings between hosts from different generations and senses of what are the most effective ways to emphasize the importance of the movies, it makes sense to stage an actual conversation rather than leaving things in the hands of producers who don’t seem to be coming up with good solutions on their own. Good on Academy president Hawk Koch and chief executive Dawn Hudson for saving the dates. Now it’ll be up to their members to actually contribute, rather than act like it’s bizarre that an organization would attempt to reassess itself.

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The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent For The Next Generation?

In 1951, a black tobacco farmer and mother of five named Henrietta Lacks died of cervical cancer at the age of 31. But before she died, the doctors treating her at Johns Hopkins took samples of her cervical tumor — and without her knowledge or consent those samples went on to become the most prolific human cells in medical research.

The cells, commonly referred to as HeLa cells, have helped research treatments for everything from HIV to cancer. But they have also become a cautionary tale about the importance of ethical standards in research: Lacks’ own family didn’t even know about her research legacy for over 20 years. When European researchers published the full genome transcript of HeLa cells without the knowledge or consent of her family earlier this month, they started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.

It’s a complicated chapter, as Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME), noted to ThinkProgress:

“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”

It’s easy to argue that HeLa cells have saved lives, that their net result was good — but to say so without acknowledging that they are also the result of a highly suspect act that demonstrated disregard for the privacy and consent of a patient ignores the ethical standards that should define scientific research. Similarly, with genetic information, many concerns are raised: It’s very difficult, if not impossible, to guarantee the long-term confidentiality of genetic information and it can reveal much more about an individual and their relatives than basic medical records.

And while the public may generally agree that there are great benefits to be gained through genetic research, it’s important that the concept of medical progress is not put ahead of the informed consent of patients — especially, as Pewen also notes because “[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”

The researchers who posted the HeLa genome sequence have already retracted their paper due to complaints from the Lacks family, but as other have noted Lacks’ genome sequence can still be gleamed from other databases.

Genetic information is health information protected by Health Insurance Portability and Accountability (HIPAA) Act disclosure rules and there have been legislative attempts to resolve some of the issues raised by advances in genetic testing, such as the Genetic Information Nondiscrimation Act (GINA) of 2008, which also prohibited employers and health insurance companies from discriminating based on genes — but those regulations won’t help Henrietta Lacks’ descendants: The final rule modifying HIPAA to implement GINA and Health Information Technology for Economic and Clinical Health Act (HITECH) protections effective yesterday does “not protect the individually identifiable health information of persons who have been deceased for more than 50 years,” conveniently excluding HeLa cell information.

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Boy Scouts of America should allow gay members, says Obama

President Obama called Sunday for the Boy Scouts of America to open its ranks to those who are gay.

Asked in a pre-Super Bowl interview if he thought the group should end its ban on gay scout leaders and members, Obama responded with a direct: “Yes.”

“My attitude is that gays and lesbians should have access and opportunity the same way everybody else does, in every institution and walk of life,” Obama said.

Obama’s comments come as Boy Scouts leaders say they will discuss whether to change their long-standing ban during an upcoming meeting.

Obama made equal rights for gays and lesbians a central part of his second inaugural address last month, becoming the first president ever to discuss gay rights in an inaugural speech.

“Our journey is not complete until our gay brothers and sisters are treated like anyone else under the law — for if we are truly created equal, then surely the love we commit to one another must be equal as well,” Obama said during his remarks after taking the ceremonial oath of office.

During his first term, Obama also became the first sitting president to back same-sex marriage and formally ended the military’s “Don’t Ask, Don’t Tell” policy.

The Boy Scouts decision to revisit the ban has attracted criticism from one prominent GOP leader, Texas Gov. Rick Perry, himself an Eagle Scout.

Perry on Saturday spoke out against lifting the ban. “I think most people see absolutely no reason to change the position and neither do I,” he said, according to a report in the Dallas Morning News.

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House Democrat: ‘Majority’ of NRA members would back stricter gun laws

The House Democrat elected to replace former Rep. Gabrielle Giffords (D-Ariz.) on Monday said he believes the majority of National Rifle Association (NRA) members would back new gun-control laws.

“There are a lot of NRA members in this country, and we have significant evidence to suggest that they are not all opposed,” Rep. Ron Barber (D-Ariz.) said Tuesday on CNN. “In fact, there may well be a majority who are in favor of some limitations on the assault weapon availability.” 

Barber recounted an anecdote about a hunter and gun enthusiast from his district who told him he would favor some gun restrictions.

“This is not about taking away people’s guns,” Barber said. “This is about preventing mass shootings and doing so through providing mental health services and reducing access to these assault weapons and the high-capacity magazines that shot us in Tucson.”

Barber was among the 19 people, including Giffords, who were shot in 2011 by Jared Lee Loughner at an event in Tucson, Ariz. Giffords was shot in the head at the event, and stepped down last year to concentrate on her recovery. Six people were killed in the incident.

Giffords and her husband, Mark Kelly, launched a new effort to promote gun-control laws on Tuesday, the two-year anniversary of the Tucson shooting.

In an op-ed in USA Today, Giffords said her new group, Americans for Responsible Solutions, would “raise the funds necessary to balance the influence of the gun lobby, and will line up squarely behind leaders who will stand up for what's right.” “Until now, the gun lobby's political contributions, advertising and lobbying have dwarfed spending from anti-gun violence groups,” they wrote. “No longer. With Americans for Responsible Solutions engaging millions of people about ways to reduce gun violence and funding political activity nationwide, legislators will no longer have reason to fear the gun lobby.”

Barber said he believed it was “possible” to take on the NRA, but that money is needed to “make a difference in communicating information and getting a message out,” which was the impetus for Giffords’s new initiative.

But the push for heightened gun control will face strong opposition from the NRA, which argues that more restrictions will do little to prevent violence.

Gun-control efforts also face an uncertain path in the Republican-controlled House. Rep. Bob Goodlatte (R-Va.), chairman of the House Judiciary Committee that oversees firearms regulations, told Roll Call last month that “gun control is not going to be something that I would support.”

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