Thursday, January 21, 2010

Should a company be allowed to hold a monopoly through a patent on crucial human genes?

Listening to On Point with Tom Ashbrook this morning, I heard a well-balanced, informative, and ethically (and more) challenging discussion about patents on human genes (audio available by 3 p.m. ET today) (you should go listen). While this is, in fact, a broader discussion, Ashbrook and his guests eloquently debated specifically the court case revolving around BRCA1 and BRCA 2 -- the genes for ovarian and breast cancer, whose patents are held by a single company, Myriad.

First, a bit of background

-- patents historically are limited to things man invents, not things man discovers. For example, as per the show, one cannot patent gravity, E=MC2, coal, or plants.

-- however, farm corporations have been known to patent plant genes for food and other crops. The sidenote to this is that they actually hold the patent to genetically modified plant genes, not the natural one.

-- Myriad holds the patent to both BRCA 1 and BRCA 2 as they happen naturally, in the human body. They have not genetically altered this.

-- the ACLU and other plaintiffs are suing Myriad to release the patent. The court case has now been delayed until February 2, but the plaintiffs have already stated an intent to use this case as precedent to release other gene patents, some of which are held by corporations, others by individuals and even universities.

A few articles that might be of interest to you as you research to form an opinion (and please do use your Google PhD to research above and beyond this):

Fact Sheet -- BRCA: Genes and Patents (note: published by ACLU, but very useful breakdown of the particulars)

Insider article: Can ACLU Expect to Win Its BRCA Gene Patenting Case Before it Even Gets to Trial?

Associated Content article: Myriad's Patent of BRCA Gene is Contested by the ACLU in Court

Argument A (presented by Hans Sauer, Associate General Counsel for Intellectual Property for the Biotechnology Industry Organization, known as BIO) is that discovering a gene, creating a screening test for it, and working within it has cost over $200 million dollars, and will cost over a billion across 10 years. The revenue made from the patent creates venture capital for additional research. Holding a patent is a motivation to discover and use.

Argument B (PDF here) (presented by Chris Hansen, Senior National Staff Counsel at the American Civil Liberties Union) states that the patents stifles competition, creates a monopoly on price (held at high cost of $3000, usually not covered for women), prohibits improvement on the testing process, limits women on ability to get adequate information when facing a major medial and/or surgical decision (Myriad will not allow any lab other than their own to test, and therefore there is no second opinion, for example), and infringes on the legal allowance for patents.

In general, the argument sticks to two sides: patent or no patent. However, during discussion other experts offered up middle-ground solutions that involve patent pools and non-exclusivity agreements.

What do you think -- should gene patenting be allowed? And if so, with what protections for us, the humans who carry the genes?

Tuesday, January 12, 2010

When does the end justify the means?

Last week, colors began appearing in people's Facebook statuses. I received several messages about it, some entreated me to join in and a few asked me what was going on. Most of the messages were the same coy message most other women -- and yes, just women, no men -- received. It begged that we, to paraphrase, titallate our fellow Facebook users, especially the guys, by posting our bra color without explanation. The concept, you see, was to raise awareness of breast cancer.

Always a supporter of initiatives to benefit finding a cure for cancer, I decided to play along...in my own way. I dropped the coy thing, but kept the playful element. When I saw people ask "what's up?" I was honest. Initially, okay once, I stuck to the original message. After that, I began sending out my own. I said, to paraphrase, that the idea was to "check your bra to remember to check your breasts -- self exams monthly!"

The next day, I went in for my annual check-up and I tweeted that I had had my annual clinical breast exam and asked women, "When did you last get checked?" Prior to that, I'd done quite a bit in support of mammograms.

Anyone who knows me knows that when it comes to cancer, activism, volunteering, social justice, etc. I put my actions (and my money) where my mouth is.

I don't just "do" Facebook statuses or forward tweets.

But so what if that's all I did? What if that's all I could do, at least in that time?

My effort would still reap rewards and benefits. It would have been sincere, true, and worthwhile. And it should be appreciated. That's because I did something valuable -- even if all I did was push the word out further, I got it in front of someone who could and would do something more about it.

Awareness raising has positive effects. In fact, this very bra meme provided higher results of action than previous attempts. The Washington Post reported that awareness drove action:
. . .its impact was immediate and dramatic: As bra colors went flying around the net, something strange happened at the Susan G. Komen Breast Cancer Foundation. After two years of intensive efforts to boost its profile through social networking, hiring two full-time people to do solely that, within two hours Friday morning, their fan base on Facebook exploded from 135 to 700.

"This would fall into the unprecedented category. We’ve never had a spike like this,” said spokesman John Hammerley. “We don’t care if it’s a $20 million campaign or a, what do you call it, a kind of electronic chain letter asking for your bra color. It’s fun. It gets people talking, and hopefully, it will lead folks to really getting a greater awareness of something that’s going to affect one in eight American women.”

I'm sure it would rub some the wrong way, exclude some, bother or offend. You can't get it all right all the time. And I'm terribly sorry about that.

. . .I am not kindly disposed towards awareness campaigns that are never ending, as breast cancer is, and I still have issues with the whole “raising awareness” for certain diseases and not others.

For example, my late husband died because of a genetic metabolic disorder. There are about a half dozen metabolic disorders and nearly all of them are life-limiting in gruesome, family destroying ways. They are rare. Which is their bad. And no famous people have been afflicted by them that I am aware of, which means no one can start a campaign that will touch the hearts of the masses. No fun little “remember the genetically afflicted” FB meme’s for the victims of metabolic syndromes, alas.

. . .

Rob’s late wife had melanoma. Do you know what color the ribbon is? Black. Nothing frou-frou or girly or uplifting about that color or even the tiniest bit hopeful for melanoma victims. Do you hear much about melanoma except for the yearly half-assed media censure against tanning salons that usually come out around the time that little high school girls are getting ready for spring prom?

Annie makes a good point -- what about the lesser known, less publicized and less "sexy" cancers?

Some men had begin a "boxer-brief" or "boxer color" meme, in response to the bra meme, supporting prostrate or testicular cancer (or both, reports vary). However, again, these are well-publicized, especially through Lance Armstrong LIVESTRONG.

Breast cancer survivors weighed in, too, wondering if people understood how it felt that an action intended to help their cancer so painfully excluded them.
Other cancer survivors joined in, telling me that they felt left out too. After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.
Like Annie, Susan makes a valid point. The bra meme did exclude some people, some of the very people it intended to help. Even worse, it hurt some of them, dreadfully.

Those of us with a heart were regretful, sorrowful -- we could sympathize with the challenge and pain.

However, not everyone felt the same way about the meme. The many comments reveal a variety of opinions on this issue. Quite a few breast cancers survivors said they totally agreed, other disagreed, and many other people chimed in with more and more thoughts on the matter, from the constructive to the flat out rude.

I found this post by Susan, who I serve with on the American Cancer Society Blogger Advisory Council, through a note by a friend who said, "Now I feel like a real asshole."

I went from "oh no, this hurt someone," to "uh oh, this is about to move from meme to kerfuffle."

People began chastising one another, on Susan's blog and off, casting shame on themselves and others for participating in the meme. More came in to begin the perverted take on the situation -- shaming participants as teases who want to show off.

In addition to simply not wanting people, regardless of position on this issue, who meant well feel horrid, I had another, larger concern: how would people, after being so shamed, respond to the next awareness and action meme from a cancer group?

I wrote:
. . .what feels true and honest to one can seem misguided to another — as the wide range of comments here prove. I see little positive outcome from criticizing people who intended support and meant well. It’s a burn that can cause people to shy from what they now view as a stove. How much more effective might it be to instead propose another action, like some commenters did? Eg, “Mine is green with Benjamin Franklin on it and I sent it straight to ACS for the new education program!” or “I lit mine on fire…to liberate and celebrate, and then I joined ACS More Birthdays.” or if we dislike bra talk or implied bra talk, offer a great alternative.
I begged that we not make people feel ashamed and horrible on the one hand while expressing consideration, respect and understanding on the other. It was sort of like tossing a pebble into a gravel pile.

The "bra memes are hurtful and cruel and participants are jerks" meme spread as fast as the bra meme. People began chiming in with, "Memes are stupid anyway."

The incredibly positive tone of Thursday morphed quickly into a severely negative tone. Within a couple of days from the day everyone was so joyfully participating in a silly, yet well-intended, meme about bra colors...the self-righteous were out with the shame wands ready to strike anyone down.

I read them on Twitter, Facebook, blog posts, and elsewhere. One came on to my Facebook with a chastisement for me and my status.

My brother-in-law Dave, who lost both of his sisters to cancer in one year (breast and ovarian) has expressed his grief eloquently. On his blog, he wrote movingly about losing his sisters. On his Facebook page, he posted happy "last all together" family photos, including one from his wedding, where I was a bridesmaid with one of his sisters. "Last all together before the cancer," he titled that one. After his second sister passed away, he did a four square photo montage of himself, his face revealing his grief and loss so poignantly that I cried, literally. "Suddenly, an only child. I have no words." That's what he titled those photos. Nevertheless, he's worked to aim his grief into a constructive do-something direction. I can't replace his sisters, but I am one of his sisters, even if only in adulthood, even if only by law -- it is also through caring and friendship, too.

So this weekend, when he asked me to re-post a cancer status, it was the least I could do.

Dave and my sister-in-law both thanked me. I hoped it helped to know that someone else was with them in this, and remembered Cheryl and Debbie, his sisters, too.

Mindful of the bra meme brouhaha, I added a comment that we were all active, too, in programs to prevent and find cures for cancer. I had hoped that this would reassure people who were suddenly concerned about social media slacktivism (and while that's another post, I have NOT found slacktivism in social media. I have found it an incredibly useful means to drive action, as Komen found.)

I wrote, "And lest anyone wonder...in addition to awareness raising on FB status, we take ACTION too by donating money, volunteering, and helping in other ways. You can find ways to help here, too http://www.cancer.org/docroot/home/index.asp."

Sadly, my preventive measure failed.

I was deeply distressed when someone else commented with a critique, demanding that I mention mammograms, etc. The comment was phrased in such a way that I caught the tone, despite the medium. Clearly, people had been influenced and were on the hunt for slacktivists and horrid cancer meme participants. Or people perceived as such. By their standards, whatever those are.

Despite my commitment to working to help prevent and cure cancer, by the end of the evening Sunday, I was All Done. At least for a while.

Even though my ACS group was working on some actions, I wanted to beg for at least a week's reprieve, to give it all time to die down and fade.

After all this is how people were feeling about it by Monday (again, my friend Annie):
Someone on my FB friend’s list was upset by the “backlash” against the campaign. She thought we were heartless people not fit to be good friends and play along because you never know who might someday be stricken. That’s her opinion. I can see why she might feel that way. I offered my experience with the meme and was basically told to “fuck off” by some of her friends, and so I did. In the yoga sutras, Patanjali advises use of the fourth key in some instances and this was one of them.
Discord. Discord on both sides, because, after all, now suddenly there are sides: the for and the against. Each side, clearly, is guilty of shaming and hurting others.

Annie also said:
But pretending that something was a good idea or properly executed when it clearly wasn’t is not the way to go about promoting anything but discord and does more to turn people away from awareness efforts than not.
I see the point -- true. The flip side is true, too. Making participants who meant well and joined in feel ashamed and terrible has that same effect, and worse.

Some may not like a campaign. It might hurt them, annoy them, or they might find it stupid. This is inevitable. There may be some awareness fatigue and valid frustration that awareness raising only extends to the "popular" ones, however, awareness does drive action.

At the end of the day, one could accurately call this bra meme extremely successful. Komen saw better results than any of their efforts had wrought, and a number of women told me it reminded them to do a self-exam. Additionally, a large number of women said it really resonated with younger women, who aren't aware.

I do think future memes could be designed more considerately, with broader inclusion of people and diseases. But can you really please everyone in every action?

Is it possible that if you saw one action work well for one thing, instead of being angry it excluded your thing, you could feel motivated to start or support an effort for your thing?

Does now knowing that this meme did have a positive effect for an organization it was intended to help change your perception of this meme? Do the ends sometimes justify the means?

Addendum:

What can you do?
  • Donate
  • Join ACS CAN to affect policy change on a local and national level.
  • Volunteer -- for Relay For Life, for Making Strides Against Breast Cancer, for Reach to Recovery
  • Volunteer as a Road to Recovery driver so that they can help transport people going through cancer to their treatment.
  • Prevent --- take charge of your own health by visiting a doctor for a clinical breast exam or a mammogram and by taking steps to reduce risk of breast cancer by eating a healthy diet, exercising and limiting alcohol consumption. See the More Birthdays campaign, and support it, too.

Saturday, January 09, 2010

How to Get It Right with Volunteers and Supporters by Playing the Volunteer Hokey Pokey

A while ago, I enthusiastically volunteered for a political candidate. I phone banked, sent letters and emails, wrote letters to the editor. . .tasks like that. Tasks I could juggle in to my life, all things considered.

In my case, all things considered meant juggling my work and family life with my volunteering – and the campaign wasn’t my only pro bono cause. Work takes most of my day. My kids are very capable but still not truly independent. I have the day while they are at school, but evenings and weekends – when most volunteer events of any type I deal with, especially political, occur – I am flat out. There are kid sports, family events, house chores, family time, birthday parties and so forth every weekend. Evenings are chock full of homework, dinner, and bedtime.

This is the same sort of life nearly any parent with school-aged kids leads. In addition to my own interests – such as political or health causes – there are also my family interests – such as school events, PTO, and community volunteering. Like most other people, a lot of people and groups need a piece of me. I want to give it, as much as I can, too. It’s why I, like so many others, prefer the Volunteer Hokey Pokey.

What’s the Volunteer Hokey Pokey?

It’s what I call the spectrum and degree of volunteering each of us is willing and able to give to a cause at any given time.

Think about it – in the Hokey Pokey you can put one hand in, one foot in, both hands in, half of yourself or all of yourself into the Hokey Pokey circle. If you think of the circle as a cause, you can visualize how people volunteer by picturing a group doing the Hokey Pokey out of sync. Each person will have varying parts of themselves in – representing the different degrees to which we volunteer.

There are the right hand in (and out) type volunteers. For example, I have stuffed and mailed fundraiser letters for the Leukemia Lymphoma Society. That’s a task I can do! It has a clear start and finish, fits around my schedule, and is a manageable size.

There are the both hands in type volunteers. For example, I volunteer for the American Cancer Society. They came to me on my level where I lived and asked me to contribute some of my expertise on the Blogger Advisory Council. It’s a regular gig that I really care about and am dedicated to.

There are the whole self in type volunteers. For example, after Hurricane Katrina I volunteered full time for a Red Cross shelter. I processed donations, ran errands, shuttled people and donations, helped people find housing, loaned my cell phone for calls, and more.

Different people don’t just vary how much they’ll put in to the Hokey Pokey circle; the same person can vary too! That’s because we all have our priorities, and sometimes we have to juggle them to make our lives work.

This can present a challenge for both volunteer coordinators and volunteers. For example, sometimes I might simply join in a meme or blog carnival instead of doing a fundraising walk. It might also mean that I take a shorter list of people to call or simply agree to forward an email. At other times, it might mean I spend a good deal of time on the cause. At all times it means I care, and each action I take is done from sincere good intentions. That must be considered and valued -- whether I am giving time, raising awareness or money, or taking action to promote, it all helps the cause.

Unfortunately, sometimes, differing priorities and agendas prevent valuing and appreciating the intent and effort. And therein lies conflict.

I thought I was doing a good job for that political campaign. At least one person disagreed, and let me know so, publicly. I’d never received – or per se expected – a kudo, but I had thought my efforts were valued. But then this campaign worker chastised me. The allegation was that I was a toe-dipper and not committed enough. Not sincere and true. Not taking enough action. Not dedicated enough. Not good enough. All because I wouldn’t skip my daughter’s soccer game for an event.

I marveled angrily at the temerity of the accusation and rebuke. I’m dedicating myself to this cause. I’m volunteering as much as I can, I thought, feeling fury build, sometimes at great personal cost. I’ve spent money, time, energy, lost sleep, and more importantly, asked my family to sacrifice me a lot so that I could be here helping. If the demand is all or nothing, well then, here’s nothing.

I continued to wish the candidate and campaign well but I quit knocking myself out.

I suppose the intent was to goad me into doing more, but it had the consequence of distancing me and instead, I did less.

Frequently the volunteer coordinator is a paid employee, so, no matter how low the pay may be, this is their job. We all know how most people rank priorities: family, job, friends, home etc. and then, hobbies/volunteer. The coordinator is operating from a top priority and most of the rest of us are operating from a below top three place. Even if the coordinator isn’t paid, it’s likely a whole self in type volunteer, who has made this cause his or her top – or possibly only – cause priority.

We volunteer because we care, and the remuneration is the reward we get from feeling good about advancing a cause we care about. We give what we can – whether that’s a hand in, then out, then another hand in…or a whole self.

The conflict arises when someone judges another volunteer’s amount of dedication and effort, as I experienced from one campaign worker.

The very worst message you can ever give to any volunteer is: not enough, not good enough. In fact, I think in general that’s one of the worst messages you can give anyone anytime. What could have motivated me instead? A number of things:

  • Hey Julie I know you can’t do X event, but if you can do Y, then that person said she’ll do X – can you help out that way?
  • I see how X doesn’t work for you, here are the tasks we need accomplished, is there anything on this list you would like to tackle?
  • I know you’re really good at writing…could you help us out with this brochure/blog post/etc.?

I realize X might be the most important thing to the campaign. I realize X might be crucial to them succeeding. I realize that they hope everyone can chip in and help with X. But there’s a long road between hoping and expecting, or at least there should be.

It’s crucial that groups that rely on volunteers see them as individuals, not a bulk entity. This brings better knowledge of identity, circumstance, ability and more, all things that can be more helpful to the organization, anyway.

It’s crucial that all level of volunteering be valued.

If I get burned too often, I begin to view the cause/group/organization as a stove and I shy away, such as with the one candidate’s campaign.

I believe most people are dedicated to something, and it may or may not be my group, so when I ask for support or help I try to keep in mind I’m approaching someone who likely has a full plate, is already dedicated or committed to some other cause, and who has their own set of priorities.

When viewing actions people take, I try to keep the same in mind. Recently I said that we are all individuals, and as such, what seems true and good to one person may appear misguided to another. What appears thoughtful to one can be insulting to another. It’s true, isn’t it?

However, telling people they didn’t do enough, their actions weren’t sincere or true, that they aren’t valued, or making them feel like jerks about what they did or didn’t do, either way, is unconstructive and detrimental to the cause and its goals with volunteers.

Ideally, a cause wants many volunteers and supporters, and/or motivated and dedicated ones. To achieve this, it must above all else value and respect these volunteers, and maintain a reputation for doing so.

Otherwise, the next time a request for help reaches that person who has been burned, the reply might be silence or a no. No help, either way, whether it’s an aggressive, “No way! I got the big smackdown last time and I’ll never help this cause out again!” or a more passive, “I’m not sure, it wasn’t received well last time, so, well I guess I’ll err on the side of opting out,” it ends up a loss for the cause.

I didn't let that one experience deter me from all campaigns, or all volunteering. I still donate my time and effort, and I enjoy that. I'm currently involved in several causes that are very valuable to me and rewarding experiences. These groups I work with now do a good job of doing things right with volunteers. They value unique and different contributions, and, when problems arise, they problem solve rather than handle with unconstructive criticism.

My fellow MOMocrat Karoli recently wrote a couple of great posts and guest starred on a news program discussing the negative consequence (or rather, lack of positive effect) of unconstructive criticism. Many progressives have been harsh in their criticism of the current administration, and on the news program, Karoli asked, “What’s your goal? What do you want to have happen as a result of criticizing the grassroots, OFA and the President?”

It’s a good question.

When we criticize volunteers, what do we want to happen? When we criticize actions and causes, what do we want to happen? And is making people feel badly the best route to achieve that?