Genetics Advocacy Overview

What is Genetics Advocacy?

Webster’s dictionary defines advocacy as supporting, pleading or giving voice to the cause of another. Genetics advocacy, then, is doing this with our genetics voices, in support of genetics issues.

Our Challenge: Why it is Important for You to Become a Genetics Advocate

In his 2001 Presidential Address to the American Society of Human Genetics, Hunt Willard challenged us to open the tent and reach out to new partners, "My concern is that those outside of the tent mean something very different than we do when they refer to human genetics or when they talk about genetics as the future of medicine. … However, this concern of mine can also be stated as an opportunity and a challenge. We should broaden our perspective to be inclusive. It is only by doing so that we will be able to demonstrate our vitality and deliver on the great promise that our field holds. …[Otherwise] we run the risk that we will wake up and find ourselves on the sidelines, not at center court." (See Am. J. Hum. Genet. 70:285-296, 2002)

Opening the Tent to New Partners: Working with Policymakers

The American Society of Human Genetics has a long-standing history of clinician-researcher collaborations, both within and across disciplines. By the 1990’s consumers had become equal partners with the clinicians and researchers in the genetics advocacy arena. Yet, genetics advocacy is just coming of age. Genetics is considered a "hard science" by policymakers, most of whom have a much more limited formal education in the sciences than any member of ASHG. There are also difficult ethical, legal and moral issues associated with genetics that make policymakers uncomfortable. Hence, if a policymaker cannot comprehend—or is confused by the science, and is uncomfortable or fearful of perceived moral issues, why should they join us in championing an issue? Here, then, lies our challenge.

Initially, getting involved in the public policy process may seem rather daunting to genetics professionals. Afterall, we are most comfortable with what we do well, and doing science in the public policy setting involves a shift in cultures. First, science in the policy setting involves breadth over depth. In other words, your discussions with policymakers should present focused, relevant explanations of science, not elaborate details. Next, the legal culture, in which public policy is based, is adversarial; scientists on the other hand are trained to problem solve and to base their conclusions on data.

 

Each community, the policymakers and the geneticists, also has a vocabulary that is foreign to the other. This alone can create barriers to getting our messages heard and considered. Because the success of each interaction with policymakers is critical to opening the next door, the following references for communicating science, compiled by the Federation of American Societies for Experimental Biology will be helpful to both the novice and skilled communicator of science.

What we Bring to the Table: Translating Our Skills

As genetics professionals, there are a number of skills that we use in our daily work that can be refined to the world of genetics advocacy. Many of us already communicate complex information in an understandable manner, as faculty members and as clinicians. We may also be excellent negotiators and crisis managers, and we are often called upon to relate to diverse groups of people. We may also feel at ease eliciting information from others. Finally, our hands’ on experience is invaluable. No other group of professionals knows our issues as well as we do, and no other group of professionals will ever be as passionate about our issues and their unique social implications as geneticists!

 

As with any new endeavor, your genetics advocacy skills will take time to hone. But we are now at a critical time for developing partnerships with public policy professionals. The pace of scientific discovery is unprecedented and the social issues are far-reaching. What we have to our advantage is that genetics policy issues are intersecting with public health and the promotion of a healthier nation. It is these latter issues that are of concern to all policymakers, and that will open the door for us to enter the public policy arena.

How Advocacy Occurs

There are many ways to be a genetics advocate. You may choose to be proactive and seek avenues to make your voice heard, or you may be reactive, waiting to be called upon but ready when the call comes. You may choose to work locally, regionally or nationally, and you may choose to communicate through public lectures, meetings or be writing letters. All venues and forms of communication with policymakers and the public are important.

Below are two lists of pointers: Approaching and Meeting with Policymakers, and Responding to Policymakers. These should help you get started. Additionally, you can find background information on the legislative process, addresses for your representatives, tips on letter writing and more at Advocacy Center on the Research!America web site.

Measuring Your Outcomes

The policy process is slow and unpredictable. You can follow all of the guidelines and still not have your issue addressed. Much of this may well be out of your control. However, you will know you have been successful, in the words of Mary Woolley, President and CEO of Research!America, when you have fulfilled the 7-11 Rule: Successful science [genetics] policy advocates should be able to walk into their neighborhood convenience store and recognize their legislators as well as key members of the media. These individuals should be able to recognize the science [genetics] advocacy leaders in return and will always know what their issues are. The key is to get in the door, and to keep the door open for an on-going dialogue that is equally likely to be initiated by either party.
 

APPROACHING AND MEETING WITH POLICYMAKERS

• Prior to your meeting, be clear about why you are initiating or attending this meeting and whether you are meeting with the legislator as a private citizen, a genetics professional, or as a representative of an organization, institution or professional society. If it is the latter, make sure you have the proper clearance to speak and that you are giving an accurate and consistent message.
   

• Be on time for your meeting, even if you are kept waiting when you get there.
   

• Don’t bring too many people. Numbers are not helpful and may even be distracting. Keep in mind that legislative offices are often quite small.
   

• Be willing to meet with the staff if the legislator is not available. Staff members may be much younger than you are, but they can be key to helping you reach your goal.
   

• Be prepared. Learn about the legislator with whom you are meeting, how the legislative process works, and the current legislative climate and agenda.
   

• Make a checklist of what you plan to talk about and practice your talk prior to the meeting.
   

• Do not assume that policymakers or their staffs are familiar with your subject. If they are, they will tell you and you can then elevate the discussion. Be patient with non-scientists when discussing technical information.
   

• Try to discuss your issue in terms anyone could understand; keep the message simple, focused and brief. Avoid the use of technical jargon.
   

• If you can relate the message to improving the nation’s health, do so. All legislators are interested in achieving this.
   

• Be a good listener. Don’t expect to control the meeting. The best meetings occur when you accept the fact that you are not on your own turf.
   

• Be gracious of others and their issues. Do not compare your project favorably to something else. Sink or swim on your own.
   

• Keep your meeting short and politely end it before your audience gets bored.
   

• Win the vote -- not the argument. You don't have to pretend to agree, but use your persuasive techniques to keep the discussion positive.
   

• Be courteous to everyone, no matter how they act, and don’t convey an attitude of hostility toward politics or politicians.
   

• Bring a one page position paper and one of your business cards. Present these at the beginning of the meeting. Include in the paper a description of the problem, what you see as a solution and what decision is required.
   

• Try to get a commitment for action. It can’t hurt to ask. You can also often learn from legislators and their staffs about others who support your issue.
   

• Make yourself available for any follow-up tasks or meetings.
   

• Policymakers and their staffs often find Issue Briefs, Fact Sheets and Talking Points useful. Many of the "go to" groups and frequently called upon experts have these available and disseminate them routinely on timely issues in their area.
   

• Be patient. Remember that policymakers and their staffs have many other issues to deal with at the same time.
   

• Be flexible. Few special interest groups get everything they want in a single piece of legislation. Have a clear understanding of what is really important and what is a negotiating demand that can be given up at the appropriate time.
   

• Be able to deliver. If your members want to oppose a specific piece of legislation or a certain provision, make sure there is willingness on the part of the membership to contact their representatives to back up your position. Do not tell staff you are backed up by a concerned membership when the constituents really are not there.
   

• Follow up your visit with a thank you letter and include additional background information.
   

• Feel free to invite legislators or their staff members to visit your lab, center or program, to learn more about what you are doing.

Adapted from materials prepared by Lewis-Burke Associates for a talk given by April Burke, at Social Issues Session I, A Call to Public Policy Action, ASHG 52nd Annual Meeting, Baltimore, MD October 16, 2002.

RESPONDING TO POLICYMAKERS

You have just received a telephone call from the office of a local or national legislator, seeking your expertise as a geneticist. What are they looking for and how can you respond effectively?

• Return the call as soon as possible, preferably that day. Legislators and their staffs are looking for quick, accurate information.
   

• Establish what is wanted from you and whether you are the best person to respond to the request. Also establish whether you are being called upon to speak on behalf of your own work, your organization/institution, or your profession. If you cannot speak for your organization/institution or profession without clearance, get the clearance or don’t speak at all.
   

• If you cannot fulfill the request for any reason, give suggestions about who might be better suited. Be generous with your "competitors." Don’t claim expertise that you do not have.
   

• The most effective "experts" can communicate science intelligibly to individuals who are less knowledgeable about an issue or scientifically savvy. They are also patient when dealing with non-scientists. It is helpful to present scientific information in a context with which policymakers can relate. Use everyday examples, not esoteric ones. If you can relate the science to improving the nation’s health, do so.
   

• Send any pre-prepared Fact Sheets, Issue Briefs, Positions Statements or Talking Points you have on the issue at once, even before your meeting.
   

• If you are being asked to evaluate proposed legislation, be efficient but thorough. Offer positive suggestions for proposed changes with a clear justification for why they are necessary.
   

• Do not be afraid to tell legislators or their staff members when they are wrong, or when they have drawn an incorrect conclusion based on available information. This is critical both at staff meeting and in hearings.
   

• Be honest. When speaking on behalf of a group that has an official position on an issue, or has even "drawn a line in the sand" on a certain issue or legislative proposal, be open about your position and why it cannot be changed.
   

• If you need more time to get an "official" position from your organization or professional society, let this be known to legislative staff. Be clear about the extent to which your present statements can be relied upon.
   

• You may be asked to prepare written testimony in a very short time frame. Make sure your testimony is readable and brief. Legislators often review testimony for the first time at a hearing.

Based on the talk given by Edith Holleman, Minority Counsel, Oversight and Investigation Subcommittee, Energy and Commerce Committee, US House of Representatives, at Social Issues Session I, A Call to Public Policy Action, ASHG 52nd Annual Meeting, Baltimore, MD October 16, 2002.