PII: S0015-0282(99)00517-8

Abstract

The Need for More CEPHS The Monash group has a 20-year experience with the storage of human sperm prior to vasectomy and chemotherapy, the longest period of storage being 17 years. At an annual charge of $90 per year that amounts to a cost of 1,530 Australian dollars. It is a sufficient bargain to tempt one to store one’s sperm in perpetuity. I believe pregnancies in bovine have been reported after 20 years of storage. The report by the Monash group and the letter from the Bourn Hall group are valuable, but in the long run it might be important to have a central registry for this type of data. Inquiries of this type require large populations followed over long periods of time that capture the full medical experience of the individuals involved. With a central registry, investigators could update their studies periodically. It seems that the clinical reproductive sciences have not confronted squarely the issue of international databases as have been developed in genetics and are being developed in the cancer area. One needs a data-collecting center that is a repository for definitions, rules, and methods for pulling data from different centers and amalgamating it for use in different research projects. The studies being discussed here do not have socioeconomic data, particularily ethnicity. The development of data-coordinating centers would better define the appropriate data and serve to strengthen the research base for clinical care. Different types of databases could be developed in basic research that might involve sample sharing, etc. The Centre d’Etude du Polymorphisme Humain (CEPH) developed by the HLA gene-mapping and linkage group in France under Jean Dausset is a case in point. Blood samples in the form of immortalized cell lines were obtained on 61 families (8 children, 2 parents, and 4 grandparents) and made available to the scientific community. Any investigator is able to obtain DNA from the CEPH families along with all prior data in return for agreeing to submit their newly discovered DNA markers back to the CEPH database. A distinct advantage of the CEPH system is that sample mix-ups and nonpaternity have been virtually excluded by typing with so many different markers. These types of collaborative public domain studies accelerated the development of the human gene map and subsequent human gene isolations. Unfortunately, in the United States there is always the concern that proprietorial considerations might intrude on such research. More and more in the United States access to large populations are gained through health management organizations (HMOs), insurance companies, and physician groups. On July 20, 1999, the National Cancer Institute (NCI) announced that it had awarded a research grant of 16 million to a collaborative group of 10 HMOs to assess cancer therapy outcomes. The bottom line is that outcomes research invariably must involve large patient populations with the need to cross various ethnic subgroups and include age-gender combinations. The need for large patient populations will predictably lead to more collaboration in health services research between private, government, and academic sectors. For the reproductive sciences, the handwriting is on the wall—where are the bioinformaticians?