Table Exercise Problem/Solution Statements and Feedback:

For this exercise, participants were asked to write a problem and solution statement using the values-based communications principles that Jane Elder discussed in her presentation. Each table was assigned an audience (engaged students; science and medical professionals; liberal media; social justice leaders; and policy makers and pundits)  and participants were also asked to consider why this audience should care about the participant's issue, keeping in mind the audience's core values. Below are several examples that came out of the exercise.

Important note:  These are exercises only; they are not official or endorsed statements by conferees or organizers.

 

1. Egg “Donation”: an argument to the Brookings Institute

In our quest to use new technologies to help people form families, we must be careful that we also protect the health of young women who are in increasing numbers selling their eggs to pay their rent, tuition fees, and other expenses. These young women are recruited to sell their eggs by misleading advertisements appealing to their altruism and need for money. When they respond to these ads, they almost never are informed that some of the powerful drugs they will be asked to take haven’t been adequately tested for safety. We must encourage policymakers to require:

• Collection of safety data thru registries and prospective clinical trials
• Enforcement of truth in advertising laws to protect the health and future fertility of our young women
• Community public health and wellness campaigns to create awareness of this problem
   

Gallery walk feedback:

• Good! Probably needs a link to society’s well-being.
• People with ovaries (not all self-identify as women)
• Young women – good – could you tap into the idea of “safety of the next generation”?
• “Altruism and need for money” seems like two conflicting motivations. Perhaps “or” rather than “and”?
• Perhaps ‘people become parents’? (family is already playing out single women)
• Good. Clear. To the Point.
• “Form families” – awkward
• “Protect” different than appealing to biopolitical values like rights, responsibility, justice
• Strong statement. Who should a policy maker get involved – which constituents are affected?
• Good and clear.
• Good use of value language.
• Good intro! Appeals to society. Values could have been developed more.
• I like how this message strikes an emotional chord with the reader but also grounds the threat in a concrete harm.

 

2. Public health and medical resources are being diverted to wasteful, highly questionable, and dangerous bioweapons research. Public health researchers and medical professionals can play a transcendent role in redirecting these precious national resources toward securing and protecting our patients’ and communities’ health. We must lead the fight against squandering our health resources and restore the funding of public health. Call your congressman to support this vital endeavor.
    

Gallery walk feedback:

• Great values
• Good use of inclusive language – “our”
• Better to ask scientists to go beyond contacting their congress person.
• Nice linking of patients and community.
• Why questionable/dangerous? List risks/problems.
• Succinct – very good!
• Add something more direct about impact on community health.
• What resources? Who’s being affected? What are future implications of bioweapons?
• How so? I need more information before I am convinced of this claim.
• What about a lead-in that explicitly touches on something they care about?

 

3. Audience: Engaged Students

Newborn screening undoubtedly has saved hundreds, if not thousands, of lives since its widespread adoption in the 1960’s. However, the benefits of screening are not sufficient justification for the non-consensual storage and use of residual blood spots. To prevent the use of individuals’ DNA for purposes they never consented to, state departments of health need to be more transparent about their bloodspot storage practices and seek informed consent from parents. You can take action against this lack of transparency by raising awareness about these genetic privacy issues in your community. Please take the materials we provided – you can hang them up in your dorn or distribute the brochures in the student center or lounges. The materials have links to our Facebook group and Twitter, which will keep you informed about our upcoming events.

 

Gallery walk feedback:

• Do you want Dick Cheney to have your DNA?
• “Non-consensual” is too jargon – use everyday language.
• Problem is constructed too complicated for average citizen -> make simpler.
• Opt in not opt out – legislate.
• Make clear that they don’t even ask parents
• Like the proposed use of social media!
• Good solutions!
• Good but where are the values in the solution statement?
• Emphasize they have data on YOU

 

4. PGD for BRCA ½ (Preimplantation for Genetic Diagnosis)

While PGD seems to offer patients and providers with the promise of ending the devastating impact of cancer, and cancer risk, has had in their lives, the realities of its use are more complicated. Before rushing to integrate these technologies into medical practice, we must gather data about their safety and efficacy, as well as social and familial impacts. Patients not only have right to know about these options, but also about their risk and chances of success. We need to safeguard the right to decline the technology as well as the right to decide for it.

 

Gallery walk feedback:

• Perhaps more calling out of specific values.
• I like the patients’ rights frame.
• I like how you tap into the rights discourse that would speak to this group while also getting at something more complex (social justice).
• Use more language from 10 values “personal freedom,””responsibilities” in the hands of “individuals” not health professionals,” family – mention the ways in which PGD can disrupt social fabric of families if not handled properly
• What about the ways this challenges out very notion of what kind of human is worthy of life? Seems an important value.
• Could you add registries/data-collection to know more about “risks and benefits”?
• Wow, this is great!
• Ask about the errors inherent in these technologies? How big? How will they be managed?
• Social and familial impacts will take generations to get data on. Feasibility of having this data prior to implementation?
• How are they more complicated? Please say something re: risks.
• More of problems, not benefits, would be good here.
• PARENTS!

 

5) Audience: Social Justice Leaders

Problem Statement:

Police DNA databases, while promising us increased security and safety, in fact encroach on our personal liberty. The collection of DNA and law enforcement purposed has resulted in unfair and unequal practices by shifting the burden of suspicion on historically marginalized communities. With little oversight of how forensic databases are used, individuals have no control over how their genetic material might be used against them, their families or their communities.
 

Gallery walk feedback:

• Is the problem how the data is used, or the collection in the first place?
• Great to see this problem highlighted in several tables! Proof of a resonant message.
• Great use of primary values.
• “innocent individuals and communities” would be more specific than “marginalized”
• Use Facebook as a frame? i.e. concern over use of personal data.
• Do you want Dick Cheney to have your DNA?
• If you are guilty do you have anything to fear?
• If you are innocent do you have something to fear?
• Great use of key values vocabulary.
   

Solution Statement:

The NAACP could provide critical leadership in demanding accountability and transparency on how forensic databases are used. By protecting the personal liberty of individual sampled by law enforcement, the NAACP can fulfill its mission of pursuing fairness and equality. We must band together to prevent the proliferation of these databases.
 

Gallery walk feedback:

• Great overall call to action here – any specific campaigns?
• Very nice!
• Excellent!
• Great, could be helpful to include examples of NAACP historical wins, lends credence.
• Great language
• Any specific aims? Leadership is very broad.
   

6) Unknown Audience (perhaps liberal media/general public?)

Problem Statement:

We want to learn more about our biology and share information and experiences. Commercial genetic testing companies are offering us the opportunity to access our DNA and share it within our networks but they are increasingly moving toward a data driven model for research acquiring consumer genetic information, owning it and commercializing it without your knowledge, consent and transparency. You have the right to your own DNA.
 

Solution Statement:

You also have the right to control, direct and choose how your genetic information is used and for what purposes. Genetic testing companies have the responsibility to safeguard your genetic information.
 

Gallery walk feedback:

• What if facebook had your DNA as well as your relationship status.
• Do you have the right to your DNA or information gleaned from your DNA?
• Shorter Punchier Sentences
• Do you want the Koch Brothers to have your DNA?
• Premable is too complicated, what do you want the audience to do?
• How?
• Personal liberty (rights), personal fulfillment.
• Freedom/liberty, responsibility, fairness. I agree, use word connected to values to hook the audience in.
   

7) Audience: Policy Makers/Regulatory Bodies

Problem Statement:

THE USPTO has granted thousands of patents on human genes that are threatening  medical treatment and biomedical innovation. In today’s world of whole genome sequencing, these patents are impeding progress and putting patients at risk.
 

Gallery walk feedback:

• But I thought patents enhanced innovation? (just kidding)
• Put people in here – medical treatment for our families, or communities or children, ect.
• We shouldn’t buy into the ‘innovation’ frame.
• ‘Patients came in too late.
• Need a lead-in that states a positive – or something that people care about.
   

Solution Statement:

Legal and Policy reform is needed to end existing and future monopolies that unfairly block innovation that improves human life.
 

Gallery walk feedback:

• This is too pragmatic a critique of patenting, i.e. blocking innovation. The main issue is a moral one. No one should own life.
• Too general (agree) (agree) (agree)
   

8) Audience: Social Justice Leaders

Problem Statement:

State and federal law enforcement agencies are amassing a comprehensive DNA databanks disproportionately filled with minority profiles. Seven states and the federal government have expanded the reach of these databanks by requiring the collection and retention of anyone brought into custody even if not charged, tried or convicted of any crime. Although DNA has helped to exonerate hundreds of innocent people, growing DNA databases and violate privacy and threaten personal liberty.
 

Gallery walk feedback:

• Good! Less data and more framing under political/societal values could have been useful.
• “Function Creep” These databases have a way of being used for purposes not originally intended or legitimated.
• Terrific framing – just one sentence here.
• “individuals and families – great! Can we add communities?
• Personal liberty! Top level value! Great!
• Isn’t that a good thing? The police keeping an eye out?
• Maybe change order here “people arrested but not charged”. It brings up bias in police behavior (ie arrests)
• Vocabulary “minority”  maybe replaced with specifically (who – which groups are assumed)
• I like how this message acknowledges a pre-existing frame before reframing the issue.
   

Solution Statement:

Let’s join together to restore personal liberty and support responsible law enforcement:

• The NAACP should submit an amicus brief to the US Supreme Court supporting the appeal court’s decision in the Maryland DNA database case.
• It should spearhead public discussion and debate about fair and responsible DNA data banking.
• Work with us to build a coalition to protect our families and oppose genetic racial profiling.
   

Gallery walk feedback:

• These notes are great but could be reordered to more general to specific actions.
• Great! Specific, positive actions.
• Very connected to ending stop and frisk outreach, use that.
• If we don’t get more folk for liberal media then we can join together. I’m happy for you to lead, I’ll assist.

 

9) Audience: Scientists

Problem Statement:

Science should help cure diseases and not play dice with the next generation. Some researchers are using unregulated synthetic biology techniques to genetically engineer human stem cells in ways that could pass down genetic mutations to the next generation.
 

Gallery walk feedback:

• Where are the values? (Language?)
• “Play dice” very vague and unsophisticated.
• “Mutations” – loaded language – be clearer. What’s wrong with a little diversity?
• “Next generation” is redundant. “Children.”
   

Solution Statement:

Human stem cell genetic engineering should be done in a way that prohibits changes to the next generation. Ask your members of congress to prohibit funding of genetically engineered stem cells to make changes to the next generation.
 

Gallery walk feedback:

• Very broad topic – well don considering broad scope – action step/solution could be more specific
• Or “should only be done if it can be shown that…”
• Need something more directly connecting with community/health
• If you are concerned about generational effects be more specific in your message – give alternative of gamete stem cells not just any stem cells.
• Not sure this is your audience...(asking a journalist to contact his/her member of congress)
• 10 values. Include the word ‘family’.