Responses to an online survey on the MSIF website (www.msif.org) have revealed what some of our readers have experienced in learning about genetics and MS and how this information has influenced them since being diagnosed. We also asked about where they go for information on genetics and MS and about their views toward research funding in this area. Two hundred and seventy-four people with MS responded to the survey.

Diagnosis of MS and information about genetic susceptibility
The vast majority of respondents (82 percent) did not receive information about genetic susceptibility at the time they were diagnosed with MS. Of those who did, nearly one-third (27 percent) felt that it was incomplete and unclear. Of the 48 respondents who had received genetic information at the time of diagnosis, one-third reported that this information influenced their choice to have children or not.

Familial MS
Sixty-eight out of 274 respondents (25 percent) reported that more than one member of their family had MS. Table 1 provides a breakdown of the details.

In a minority of cases, having multiple family members with MS was a relevant factor in the decision to have children or not (10 out of the 68 respondents with a family member with MS - 15 percent).

Learning about genetics and MS
The large majority of subjects felt that they were not sufficiently informed about progress in MS genetic research (68 percent). The Internet was the most widely utilised resource for learning about genetics and MS and for keeping updated on related topics (70 percent). Other sources included MS society magazines, neurologists and medical and scientific journals.

Supporting research
Some respondents felt that MS societies and other funding sources do not dedicate a sufficient amount of money to genetics studies (24 percent) compared to 46 respondents (17 percent) who felt that enough money was currently being dedicated to these studies. The survey found that a large number of people with MS are apparently not well informed as to the amount of funding their MS society dedicates to genetics research (approximately 60 percent).

Conclusion
The survey suggests that the topic of genetic susceptibility is often not discussed at the time of diagnosis. However, this result may be biased according to when people were diagnosed. Hopefully, since our understanding of genetics has increased over the past years, susceptibility to MS is becoming a more common topic of discussion at the time of communicating an MS diagnosis.

Fortunately, people interested in being informed and updated on progress in genetic research in MS have many sources of information to access. National MS societies are often able to assist people to sort through the often complicated, and sometimes inaccurate, information available on the Internet.