Am I eligible for the study?
You are eligible for this study if you have been seen at Massachusetts General Hospital (MGH) and have a primary lung cancer. This means the cancer originated in your lungs and has not spread from another organ. For example, a melanoma or prostate cancer that is now in the lung is not eligible to participate in our study. Primary lung cancer types include non-small cell lung carcinoma, small cell carcinoma, adenocarcinoma, squamous cell carcinoma and carcinoid tumors, among others. Your diagnosis must have been given in the past six months.
Non-related family members or friends of cancer patients are also invited to participate in the study as healthy comparison cases (called “controls”). Controls may be eligible as long as they are over the age of 40 and have not had any type of cancer, except for basal and squamous cell cancers of the skin. This type of participation is very helpful in determining why some people develop disease and others do not. Controls are compensated upon completion of study requirements ($50 for blood sample and questionnaires, $25 for cheek swab and questionnaires).
I am being seen here for a second opinion and unsure if I will be treated at MGH. If I don’t come back can I still participate?
You do not have to return to the hospital just to complete this study. Any information that we are missing we can send to you or we can telephone if you prefer. It is important that we collect at least a simple blood sample or cheek swab while you are at MGH.
Can I spare the blood? Why do you need it?
The amount of blood (up to 45mL or 3 tablespoons) we are talking about is small compared to the amount you have in your body. It is no different than what a doctor normally orders for a routine physical and blood work. It will not cause you to need more blood than your body might already need. If you do require blood later, it’s because of underlying illness, not because of your participation in this study.
Your blood provides the best sample of material for us to test. To perform genetic analysis, we can instead take a swab from the inside of your cheek, but blood provides us with much more data. With the 45 mL of blood collected, we can run many different types of analyses, whereas a cheek swab yields limited results.
Is there any risk to my participating in this study?
The physical risk is minimal and is the same as any routine blood draw that the nurses and phlebotomists draw each day. There may be some slight bruising at the site.
The other small risk is that of the loss of privacy. We will be reviewing your medical chart and we will be gathering genetic information. To maintain confidentiality, participation in this study is not noted in your medical chart. All information is kept confidential. Only our trained, approved study staff will have access to this information. To protect you/your family members we do not use your name on samples. We assign a number to all samples which are analyzed using that number. At the end of the study any links that could connect you to the blood will be erased so that no one, not even the study investigators, will be able to identify any individual blood sample.
I got lung cancer because I smoked. What else are you trying to find?
Smoking is the major factor in developing lung cancer in the US, but we want to know more about how smoking specifically affects people’s risk. For example, the starting age and duration of a smoking habit may play a role in disease development. We are also interested in special lung cancer populations such as people who have never smoked, which seems to occur more often in women than men. People who have never smoked account for about 15% of lung cancer cases.
We are also interested in other factors such as your overall health, family history, and work history that may have an impact on lung cancer development.
What is genetic testing? Are you looking for a cancer gene?
We are not looking for a “cancer gene”; the causes of lung cancer are likely attributable to several different genes and environmental factors. Because there isn’t really one “cancer gene,” and we are looking at specific pieces of genes (sequences) that vary in people. 99% of genetic information is the same in all people but the slight variations are what make us individuals. When these sequences are slightly different from the typical pattern found in most people, it is called a polymorphism. Polymorphisms can make people more or less susceptible to certain diseases and we think this may help us learn some important things about certain cancers.
Depending on environmental factors genes “express” themselves differently. In almost all cases, a gene’s ability to promote disease depends heavily on its being switched “on” or “off” by other factors in its environment. An environmental factor for lung cancer is smoking. Another is asbestos exposure. We are trying to figure out how the combined effect of having certain polymorphisms and smoking or being exposed to certain chemical or other substances can lead to lung cancer. However, just because you have a polymorphism associated with an increased risk it does not mean that you will develop a disease. We are not able to provide you with any individual results from your participation in our study.
How do you do the testing/analysis?
Using cells collected either from the inside of your mouth or from a single blood draw we test specific pieces of your genetic code that are different from others. These are called single nucleotide polymorphisms, or SNPs for short. Most SNPs have no effect on health, but some may predispose people to certain disease or influence our response to a food or drug.
We are looking at commonly occurring SNPs that give us more information about lung cancers. This might help other people who have lung cancer in the future as well as people who are at high risk for developing cancer due to their family history or job. We think that this information will also help us to predict how a person will respond to various lung cancer treatments providing better prognosis.
What are the results of my test? If I am a control, will you tell me if I am going to get cancer?
We cannot provide you with the results of your specific test per institutional guidelines. All information is kept strictly confidential and for research purposes only. The main ways to prevent lung cancer is to avoid tobacco smoke (direct, and second hand).This research is not intended to provide you with specific information about your genetic status or health. The purpose of this study is to generate scientific knowledge about genes and the genetic basis of disease. In addition, lab personnel do not know the identity of any sample they are testing. They are unable to link a specific sample to an individual. At the end of the study we destroy any patient identifying information so that no one can link a particular blood sample to a name.
What are some of your results? Have you found anything that may be in helpful in treatment?
We are looking at many different factors that may affect outcomes in lung cancer treatment and have published a number of papers about the results. If you would like more information you can look at our website’s home and publications page.