What research means to you today, tomorrow

By Ruth SoRelle, M.P.H.

When you provide information about research – either at a scientific meeting or to the public through the media or direct contact – you balance on a fine line. If you are overly optimistic about the research, you run the risk of generating false hope. If you do not provide information, however, you could extinguish hope altogether.

Much of the funding for science comes from the federal government – the National Institutes of Health, the National Science Foundation and the various departments that make up the executive branch. That makes it even more incumbent on researchers to make their results public and let those who pay for the work know what has been accomplished. Yet many are reluctant to make their results public because:

• They are laboratory-based and no one knows what the exact human application will be.
• Individuals might read into them more than they can provide at this time.
• Translating a result in tissue cultures or animals into information relevant to the public is difficult.
• Individuals will read into such research what they want it to be.

Qualifying the results

Certainly, I have seen that. As editor of this publication and in a prior life as a newspaper journalist, I wrote many stories about research findings. When I did so, I tried my best to qualify findings to ensure that people knew that human applications would be years, if not decades, away and even that could not be promised.

Inevitably, however, I would receive a telephone call or letter or e-mail from some desperate soul who had the disease being studied and wanted to know how he or she could be part of the study. Sometimes, even when I pointed out that the work had been done in mice and would be limited to those rodents for the foreseeable future, they were insistent that they needed the "treatment" and wanted it provided forthwith.

False hope

Early in my career, I learned firsthand the devastation that "false hope" can wreak on a family. In the late 1970s, interferon – a natural substance produced by the body in response to viral infection – came on the scene. It appeared in laboratory studies to have an anti-tumor effect and many scientists wanted to determine if the same would hold true for people with cancer.

No one knew what effect it would have. I talked to the researchers here in Houston who were looking at interferon, and they were quick to point out the tenuousness of the project, although they said the promise should definitely receive further attention.

After I wrote my story – and several similar ones appeared around the world in the print and broadcast media – I received a call from a British family. Their young son had far advanced leukemia and they wanted to bring him to Houston for treatment with interferon. They had not read my story, but they had seen a broadcast in Britain and had placed their house on the market in order to purchase the tickets and the interferon their son needed.

With a heavy heart, I told them not to come. Interferon was too untested to give their son. His disease was not one of the ones destined for early study. Interferon had not yet been synthesized and the natural product was in short supply.

They would not listen. It was that or no hope. They were coming.

I called the researchers involved. They had also advised the family not to come. In addition to the fact the child's leukemia was not a disease that they had permission to study, they also had no interferon at the time. They told them not to come.

They came. There was no interferon. People in Houston found a way to cover the cost of their tickets, and they were able to take their house off the market. Houston residents did all they could to make the stay pleasant, taking them out to dinner, providing entertainment and a place to stay. The one thing they could not do was provide interferon where there was none. And they could not save the child's life. Interferon would not have done that either.

He died a few months after returning home to Britain.

Avoiding hype, maintaining hope

Certainly, that taught me the importance of not hyping the research. In my role here as chief science editor in the Office of Public Affairs at Baylor College of Medicine, I frequently write about often innovative and new findings in the laboratory. The scientists with whom I work are even more concerned than I am that my words and theirs do not promise what cannot be achieved. It is a daily concern and battle we face.

Yet we feel that as long as people with devastating diseases know there is research in the works, they will feel less alone and more hopeful. Many will take part in patient studies, even though they know that it is unlikely that they will live to benefit from the results.

I find inspiration and hope in their words, "If it won't help me, maybe it will someone else."

That is the essence of altruism and a belief in the future.