The following statements came out of a media communications and messaging exercise conducted at the 2011 Tarrytown Meeting by John Bianchi of Goodman Media International.  The goal of this exercise was to challenge participants to think about messaging in a systematic way and to work on communicating their concerns on particular issues in a succinct yet informative and emotionally compelling way.  Participants come from diverse backgrounds as scholars, activists, advocates, lawyers, scientists, policy-makers, artists and students, and have differing levels of experience with the media. 

Fifteen tables of about eight participants each were given one of six scenarios related to a biopoltical issue of concern.  Each table had seven minutes to come up with a 3-tiered media statement which included:

1.       Overview/”sound-byte”

2.       3 supporting sentences

3.       Concluding statement

Scenario 1: Sex selection

Start-up biotech company BabySure has introduced a new prenatal blood test that reveals chromosomal information about a fetus at 6 weeks pregnancy. BabySure had originally promoted their test to detect Down syndrome, but initially low uptake of their product convinced them to re-launch it as a test to determine sex as well. BabySure’s splashy ad campaign urges women to “ask your doctor about BabySure at your first prenatal visit.” Its ads use the tag lines, “Here’s what to do just after your pregnancy test” and “Your baby, your choice. Literally a once-in-a-lifetime opportunity.”

Coincidentally, the United Nations has just released a statement responding to new European census data showing skewed sex ratios in several Eastern European countries, results that suggest sex-selective abortion is taking hold in regions where it has previously not been widespread. In conjunction with the statement, the UN Secretary-General devoted a high-profile speech to the detrimental social consequences of sex selection, which include increases in sex trafficking and large numbers of young women from developing regions migrating as “mail-order brides” to countries where sex ratios are severely skewed.

You are a women’s health advocate wary of questioning anyone’s decision to terminate a pregnancy. Yet you oppose sex selection. What do you say to the Associated Press reporter calling to get your reaction?

 

Participant responses:

“You love your child, you can’t program it.  Parenthood embraces the unexpected features of a child.  Reducing your child to biological properties limits your freedom to love it as it is.   If you start programming kids, where do you stop?  Sex selection makes your life and family poor.  BabySure is a sure way to _____”.

“Products like BabySure will lead us to societies with many more males than females.  In Romania there are four boys born for every three girls.  What will these extra boys and men do?  Allowing products like BabySure are a recipe for disaster.”

“Convincing women to use BabySure and engage in sex selection is not good for women or our country. It will create a shortage of girls, up to four boys for every girl born.  It exposes women to unnecessary medical risks and some may die.  It will create difficult social problems for our country.  Women’s reproductive choices can have several consequences and should not be indluenced for commercial purposes.”

“The BabySure test drives a wedge between a pregnant woman and her fetus.  86% of pregnant women are anxious about the outcome of their pregnancies, and it’s wrong to increase this anxiety without health benefits.  Making parents’ commitment to their children contingent on having particular characteristics is bad for children, for families, and for society.  Choosing a child for its sex – or its eye color, or hair color, or weight or other characteristics – turns the child into a product.  BabySure isn’t a means for helping people to have happy, healthy families but just a means of making money from pregnant women’s anxiety.”

“BabySure wants to get rich off your anxiety.  You shouldn’t design your babies like your living room.  They pulled a bait and switch when they moved form Down to sex.  But even the bait was toxic.  They’re encouraging you to treat your future children like damaged goods or ____ seconds. 

 

Scenario 2: Commercial Surrogacy / Reproductive Tourism

56-year-old Wopra Linfrey, who believes that cross-border surrogacy is an example of “women helping women”* and a “confirmation of just how close [different] countries can be,”* has just announced that she and her husband will be welcoming triplets into their home when the babies are delivered next month by a surrogate in Guatemala. She explains that she is paying the surrogate handsomely. The tabloids, entertainment media, and mainstream press are heralding the impending birth as a boon of modern fertility medicine and globalization, and carrying story after story about happy American couples who have used surrogates in India, Mexico, Eastern Europe and elsewhere.

You have just learned from women’s health colleagues in India that a former surrogate has died giving birth to her own child two years after her contract pregnancy. They have spoken to the woman’s family, who told them that the fertility clinic for which she worked as a surrogate required her to deliver by Caesarean section although there was no medical reason for that. Because the money she earned was spent immediately to pay off debts, the family could not afford professional medical care for her during her subsequent “natural” pregnancy. The women’s health advocates suspect that complications due to the C-section contributed to her death by hemorrhage in childbirth.

You have an established contact with a 60 Minutes producer who agrees to interview you about this story, in light of the publicity that Wopra’s surrogacy has created. What do you say?

* actual comments made by a well-known television talk show host

 

Participant responses:

“While I certainly sympathize with Woprah’s struggle to have a baby and understand her relief in funding a paid surrogate in Guatemala, I want to raise a troubling issue.  An Indian surrogate died when giving birth to her next child, and we in the international women’s health movement strongly suspects her death was caused by her work as a surrogate.  In India, there were only 15 clinics offering IVF and surrogacy by low-paid Indian surrogates in 2005; now there are over 150 + countries. 2.) Canada puts info on IVF fertility treatment and steep increase in cancer risk on their informed consent forms, but users don’t and don’t know anything about it. 3.) the health risks of IVF/surrogacy are unmentioned in the US and India. We need some new regulations and monitoring.  Transparency in the global reproduction industry is important if we are to protect women’s health.”

“We are talking about rented wombs here. 1.) I’d like to hear from Woprah’s surrogate about her thoughts on this arrangement! 2.) Is this women helping women or women hiring women? 3.) recently in India a surrogate died in childbirth after giving birth to a child for foreign couples.  Paying a surrogate is not enough; Wopra Linfrey also needs to ensure her health and safety.”

“Women helping women? Or women harming women? Evidence of harm: 1) [surrogate’s name] died, 2) she underwent unnecessary surgery, 3) if representative of other women in her situation, she was exploited because of her poverty and lack of education.  Help women by regulating against cross-border contract pregnancy”

We need to be more aware of dangers of surrogacy and the exploitation and abuse that occurs when surrogacy is outsourced. 1) over 50% of women experience health traumas and serious lasting health problems, 2) cannot have their own children and become excluded from own community, 3) because it has become commercial and international, surrogacy is not being practiced safely.  (same as lead sentence)”

This surrogate mother’s health has been put at risk through the unnecessary Cesarean operation and the implantation of multiple embryos, leaving her carrying triplets. The payment of a substantial amount is no compensation for the impact of this procedure on the surrogate and her own family. This couple’s joy at building a family needs to be balanced against the harm to both the mother and her family. With surrogacy carried out in other countries, oversight of the pregnant women may be inadequate and are particularly troubling. We need much greater awareness of the negative aspects of commercial surrogacy arrangements in developing countries.”

“How are these children going to feel when they grow up and learn they were bought and sold like designer handbags? Eighty percent of young adults who were conceived from ‘donor’ sperm or eggs are concerned that they were created as consumer items, so ‘surrogate’ babies would be even more distressed. Women are put at risk too when they “agree” from poverty to become surrogates. A woman in India has recently died as a result of a surrogacy agreement. Is that “women helping women”? ‘Surrogacy’ is really just baby selling but we don’t allow people to be bought and sold.”

“Exploited surrogate’s death caused by baby mill. Work conditions were unregulated abroad. Americans are incentivizing the baby trade. Profit is being placed ahead of public health.  But for American demand, this surrogate would likely still be alive with a healthy child. “

“Surrogacy is beneficial for infertile parents-to-be, but when there’s lots of money involved, it can be used to exploit vulnerable populations. Indian surrogates get paid 10% as much as their American counterparts, which implies that some women are worth less than others. Financial gain, in the extreme, is coercive and altogether undermines informed decision-making. Some commercial surrogacy agencies have strict rules about pregnancy and delivery, thus taking away women’s autonomous choices about their bodies. Contracting parents should have a caring relationship with surrogates to prevent this exploitation.”

“Should the start of a new American family come at the cost of another’s? Many surrogates are taken away from their families during the 9 months, they do so in order to provide for them.  Why not ask our own family members (sisters, aunts) to voluntarily carry our children when we cannot. If it’s someone we know, exploitation can be avoided.  C-sections are convenient for parents but put the surrogate at unnecessary risk, especially if they want to have children of their own. We regulate labor rights in the US but we have neglected reproductive labor!”

“Women birthing children for other women goes back to biblical times. But, women being paid to carry and birth children is recent and presses us to ask what is altruism when there is compensation? Women carrying and birthing children for money are working, how are they really faring? Women working as surrogates are exposed to real and potential harms.  We need to know more in order to better help women surrogates protect their interests.”

“Wopra Linfrey’s surrogate may be in danger for her life.  The recent death of a surrogate mother in India points out the very real risks to surrogates.  Surrogate programs mainly deliver by C-section increasing the risk to the mother. Ethicists see no different between paid surrogacy and paid kidney donors.  Surrogacy is exploitative, unjust, and shouldn’t be celebrated by media moguls.”

“There is a complete lack of medical or legal protection or follow-up for foreign surrogates leaving them at risk for health complications and even death.  Surrogate clinic doctors have huge conflicts of interest when they are privately contracted to prioritize the delivery of the baby over the health and interests of the surrogate mother.  Many surrogates cannot give proper consent – some cannot read the forms and give consent with a thumbprint. Responsible oversight is desperately needed.”

“A lack of legal protection and medical follow-up for foreign surrogates leaves them at risk for medical complications.  Work conditions in foreign surrogacy clinics are unregulated.  Effectively they are baby mills.  Many commercial surrogates cannot consent because they are illiterate; they have to sign with a thumbprint.  Westerners are incentivizing the baby trade – as such profit is being placed ahead of public health.    Responsible oversight is desperately needed.”

 

Scenario 3: Direct-to-consumer gene tests

The 2012 presidential campaign is under way, and as usual, questions have arisen about the age and health of several candidates. Some influential researchers, including the Personal Genome Project's George Church, have suggested that we should scan the DNA of all candidates and publish the results.* Momentum for this is building, and numerous commentators have pointed out that candidates who refuse may be punished by voters. Some have even suggested that the data will be revealed one way or the other, since DNA samples can be obtained from a hair or an unfinished piece of pizza.

Several public health scholars [including several Tarrytown Meetings colleagues], on the other hand, are warning against the possibility of "genetic McCarthyism." They're concerned about the precedents that gene tests for public officials and candidates would set. They worry that DNA results would be abused as a new form of opposition research, with dire and misleading warnings being broadcast in attack ads: "Can we risk electing a president who may soon be suffering from a debilitating disease?"

You are asked to weigh in. What do you say?

* This is a non-fictional aspect of this fictional scenario.

 

Participant responses:

“Obtaining and publishing a candidate’s gene sequence would be misleading, harmful, and without potential to contribute to the debate beyond commonly reported health information.  Lack of predictive value of most genetic tests.  Potential to encourage outdated notions of genetic determinism.  Flies in the face of all privacy and anti-discrimination reforms made in the past decade. Let’s worry about the real issues in this debate, which is who will progress the economy, stimulate jobs, not a fictional _____ of an indeterminate geneticized future.  Let’s expect of our leaders what we expect of each other: openness on those issues that are important.”

“Direct-to-consumer genetic testing invades the privacy of presidential candidates in a way that irresponsibly promotes the idea that our genes make us who we are.  Research demonstrates that each of us has an average 3-5 fetal genetic mutations.  Genetic testing can only predict only 1% of know diseases.  By requiring presidential candidates to submit to genetic testing we run the risk that we will all be subjected to genetic testing in all aspects of our lives.  The risk of DNA testing is greater than the reward.”

“Demanding that candidates hand over their DNA would not benefit the public at all.  ____% of genes have little or no correlation with eventually getting the disease.  By forcing candidates to turn over their DNA, we would be setting a precedent that all of us could be forced to provide our DNA to employers.”

“Genetic testing can’t provide the information we most want from our candidates.  90% of common debilitating diseases are not detectable by a genetic test.  Our genomes do not determine our capacities.  Vulnerability and susceptibility is not equal to certainty regarding diseases.  Requiring genetic testing in politics will lead to privacy abuses and discrimination.”

“The illusion of empowerment.  Predictive value is limited. Our genomes are not who we are.  A useful tool, not a crystal ball.  Vote for best people not for genes.  Discriminatory, uncertainty, anti-democratic, inaccurate.  Can’t provide the info we need.  No clear predictability.  More important things to worry about.  Not electing a body but a person.”

 

Scenario 4: DNA Forensics

Police in California are searching for a serial rapist-murderer who, coroner’s evidence suggests, brutally tortures his victims before killing them. Three witnesses who seem reliable report having seen the person who police believe is the perpetrator apprehending his victims; two of the eye witnesses say he is Hispanic and one says he is African American. Victims’ rights groups and others are demanding that the state attorney general’s guidelines restricting the use of “familial searches” be lifted and that dragnets be organized to round up Hispanic and African American men in communities near the sighting in order to find matches in the increasingly large police DNA databases. Talk show hosts are adding their support to these demands and stoking public outrage against police for not having apprehended any suspects.

As director of a racial justice organization, you’ve received an invitation to appear on the Will O’Farley News Show on Fox TV, and you’ve been promised an uncut 40 seconds to make your case. Write your script.

 

Participant responses:

“Our Bill of Rights protects all citizens against unreasonable search and seizure.  The idea of rounding up all men of a specific ethnic/racial group is equivalent to an unreasonable search.  DNA profiling identifies individuals not groups.  Eyewitness testimony is notoriously unreliable.  The sample evidence should be tested against any reasonable suspect.”

“If we are going to catch this killer, we need to focus on proven, effective law-enforcement strategies to protect public and individual rights, not wasteful ham-handed tactics.  DNA dragnets have repeatedly been tried and repeatedly failed, and create distrust in communities whose cooperation in needed to solve these types of crimes, particularly based on vague, inconsistent descriptions.  Familial searching guidelines should be put in place to allow search when it will be useful. We need to stop wasting time and get to work using proven tools to find this killer.”

“Dragnets are a very ineffective and wasteful means of apprehending suspects, especially in large population areas with lots of transients.  If police choose a dragnet it must be under judicial oversight to prevent people from being intimidated from giving their DNA (voluntarily) and dragnet DNA must not be retained on the databases.”

“ DNA dragnets prey upon the rights of everyone, without catching anyone.  What’s the point of the database if in addition we stalk African Americans.  This is a modern day Crusade based simply on the color of people’s skin.  We all abhor crime.  Law enforcement should collaborate with the African American community to avoid this type of injustice.

“Rounding innocent people by race violates their constitutional rights and doesn’t help catch the perpetrators.  There are better ways to use DNA to solve crime.  Growing police power threatens everyone.  It’s a waste of resources.”

 

Scenario 5: Responsible use of human biotechnology

Over the past six months, the Biotechnology Industry Organization has mounted a major marketing and lobbying campaign for a huge government program to fund biotech sector research on cures for cancer, Alzheimer’s, diabetes and other life-threatening diseases that are of particular concern to baby boomers. The project is being described as “bigger than the space program, bigger than the Human Genome Project.” It would provide long-term funding guarantees to private companies and university research centers to “advance life sciences research with near-term applications to human improvement” and would exempt funded projects from certain human subjects research requirements. BIO argues that it will save lives, create millions of new jobs, and that in the long run, the huge expenditure will “cut federal health care spending and save the American budget trillions.”*

The campaign was initially considered a long shot, especially in the wake of recent significant cuts to Medicare, Medicaid and Social Security. But the effort has support from a number of high-profile Democratic and Republican legislators, most of whom have received significant campaign contributions from BIO and biotech companies. Now the Administration has asked the President’s Bioethics Commission to evaluate the program from an ethical standpoint, and the commission has announced hearings at which it will hear testimony from biotechnology researchers and executives, representatives of patient advocacy groups, cancer survivors, and celebrity campaigner Michael Jeeves, who is in the early stages of Alzheimer’s disease.

You and a large group of colleagues - scholars from a range of disciplines, public interest and public health advocates, and others - have come together in opposition to the proposal. They have been able to identify a small amount of funding for a communications effort to counter the BIO push, and are meeting to craft your messages. What do you say?

* a real quote from “Key Findings from a National Survey Of Voters,” Public Opinion Strategies and Hart Research Associates on behalf of the Biotechnology Industry Organization (2011)

 

Participant responses:

“How can you benefit humanity without protecting human subjects?  Four cases in the last five years where there were unintended consequences.  The whole medical research enterprise is based on trust between researcher and subject. Let’s focus on the results of research but not abandon our ethical obligations to mothers, fathers, sons and daughters.”

“Public funds for private gain is a bad idea.  It’s difficult to separate “hype” from real potential when so much profit is at stake.  Consider the case of Jesse Gelsinger. Why divert money from public health? Emergency rooms are closing. Medicare is at risk. Why fund speculative research? Use venture capital, not public funds.  How is dissent treated on the President’s Bioethics Commission?”

“This is a proposal for an unethical BIO boondoggle and will not develop cures for complex, terrible diseases.  Science doesn’t work like this.  Big government and big pharmaceutical corporations do not create good science and effective medical care.  Thirty-five percent of seniors now cannot afford medical care.  Throwing taxpayer’s money at complex medical diseases will not give us magic bullet cures, and will take money away from existing programs that do work.   We need prevention research and long term cure systems.  Basic research plus humane care and support, not corporate profits, will give us a healthy aging society.”

“Science doesn’t work like this.  The human genome project was a technology initiative, not a scientific one.  So was the manned space program.  They are not models for solving these conditions.  This is just a ploy to profit from these ailments.”

“Biotechnology should be developed for the benefit of humankind and the world in general.  Short and long-term consequences of biotechnology.  Establishing social priorities of biotech development and direction.  Thirty percent of the elderly fail to benefit from medicine due to inadequate funding.  Claims regarding biotechnology need to balance honestyly and truthfully the real and potential benefits and risks of planned and evolving biotechnology.”

“Biotechnology is a great tool and has to be studied before human use.  There is evidence of potential harms. We have to guarantee access to all people.  All treatments in history have risk, and it could not be different.”

“Don’t be fooled. It’s corporate welfare for big pharmaceuticals.  They are peddling more hype than hope for patients, the American family, and taxpayers.  Funding science is a good thing but corporate handouts aren’t the way to do this.  The biotech industry has never produced as much as it claims to, just look at the bubbles that burst in 2002, and today.  This is an unethical distribution of resources - it’s the children who should be supported.  Let’s fund public health, not corporate welfare.”

“Don’t be fooled by corporate hype claims that massive new funding of biotech research will produce the cures that we all seek. Medical research is critical, but we shouldn’t support irresponsible use fo our limited taxpayer dollars. This project fails to safeguard the health and well-being of research subjects and needs more revision.  We need to look more closely at who really benefits from this project.  We all must revisit the best way to advance medical research and avoid the mistakes of earlier projects that wasted our precious public dollars.

“Exempting biotech from the normal regulatory safeguards is like driving down Pike’s Peak with no guardrails.  We want to keep those rails in place.  Human subject research guidelines protect our loved ones from reckless research.  We learned true lessons from World War II – It’s key to ensure that scientists serve the common good.  Biotech wants to rush because it helps their bottom line.  Profits should not trump protecting patients.”

“This corporate campaign is more hype than hope for American families and patients.  While big pharma executives and the big winners of $100 billion in this deal, the cost to American lives with devastating cuts to social security, medicate and Medicaid is unquantifiable.  This isn’t any more about a medical space race than smoking Lucky Strikes was about curing stomach aches.  Exempting pharmaceutical companies from the standard regulatory safeguards is like driving down Pike Peak with no guardrails. Don’t be fooled by corrupt corporate welfare disguised as scientific research.”

 

Scenario 6: Synthetic Biology

Celebrity biotech entrepreneur Dirk Bender of BenderLabs has just held a press conference announcing that his lab has created a microbe that incorporates novel gene sequences, enabling it to produce the chemical compound Xxydol-2,3, which some claim can relieve pain among breast cancer patients. Joining him at the press conference are half a dozen breast cancer patients, including a world-famous women’s soccer star, who testify to the effectiveness of the compound. Bender has applied for a patent on the genome of the newly engineered microbe. The novel gene sequence inserted into the microbe was developed by students at MIT's Synthetic Biology Foundry, working under a grant from BenderLabs. Xxydol-2,3 is currently undergoing clinical trials, and a ruling by the FDA on its commercial use has not yet been issued. Early results suggest there may be serious side-effects, including a higher rate of miscarriages among women using the drug. Speaking off the record, a number of scientists voice doubts that Xxydol actually relieves pain to any significant degree. Others doubt whether the synthetic biology approach Bender is using will ever prove commercially practicable. Media coverage of Bender’s announcement is celebratory. Headlines read: “At Last, Help for Cancer Pain” and “Synthetic Biology Relieves Breast Cancer Agony.” BenderLabs stock rises 30% within three hours of the announcement.

You believe that Bender’s announcement is an attempt to garner publicity, attract venture capital, and increase the value of his stock. You agree with those scientists voicing doubts about Bender’s work. Survey research suggests that the general public is responding strongly and positively to the announcement. You want to make sure that an alternative voice is heard in the media, one that paints a more cautious, more nuanced picture of the situation. You get a call from New York Times bioscience reporter Rick Slade who wants to know your reaction to Bender’s announcement. What do you say?

 

Participant responses:

“The Xxydol product may have serious side effects that have been deliberately withheld.  BenderLabs has a considerable financial interest in the product.  Xxydol is currently undergoing clinical trials, and early results give reasons for concern about serious side effects.  Bender wants to attract investors.  You can’t make up your mind about a new medication before you have the full evidence.”

“Public opinion and breast cancer patients are being mislead.  There is no evidence that Xxydol offers pain relief, and it may produce miscarriages.  Cost/access is not clear.  We need to be critical about celebratory news about scientific research.”

“If this new compound does help breast cancer patient it should be readily available and not patented for profit.  We don’t know the benfits yet the results of clinical trials are not available.   There is potential conflict of interest: BenderLabs produced the compound and provided funds for the clinical trials.  Let’s not take advantage of a difficult situation by putting forward a cure that has some concerns; there is a higher rate of miscarriages.  Let’s speed research into the root causes of cancer: toxics and pollution.”

“Does this work? We don’t know.  We musn’t exploit sick people just to make money.  How many women will have miscarriages because of this?  Read the fine print!”

“BenderLabs should wait for FDA approval before making questionable claims about its drug’s effectiveness.  Scientists have raised questions about the drug.  Dr. Bender stands to make huge profits despite serious concerns that this drug could cuase serious side effects, including higher rates of miscarriage.  Serious concern exist about the safety of the ___ BenderLabs is using and the impact they may have on worker safety.  We must be sure BenderLabs drugs is safe and effective before making wild claims to raise their stock price.” 

“New product Xydol may cause miscarriages and not relieve pain.  Xydol is Nasdaq science about saving stocks not the people.  If Xydol becomes art of routine care, it will harm women and children.  Xydol turns vulnerable women and children into guinea pigs.  Xydol is about private wealth formation, not science; the only thing it relieves is Bender’s bottom line.”