Human Genetic Material Survey

Detailed information for October 2002

Status:

Inactive

Frequency:

One Time

Record number:

5021

The objective of the survey is to produce new statistical information on the collection, use and disclosure of human genetic material in Canada.

Data release - March 25, 2003

Description

This survey focuses upon physical and electronically stored human genetic holdings for research and/or diagnostic purposes by the federal government as well as selected commercial entities. For the purpose of this survey, genetic material is defined as both human organic material (i.e. blood, hair, etc.) as well as extracted genetic information stored electronically (DNA sequences, etc.).

The objective of this survey is to investigate and further the overall understanding around the holding of human genetic material and/or information, such as the magnitude (counts of distinct samples), types of material, storage processes, etc. across various sectors in Canada.

The survey was sponsored by the Genetic Privacy Working Group of the Canadian Biotechnology Strategy. Results of this survey will inform the survey sponsors as well as the Canadian population of both the scope and research practices related to the holding of human genetic material in addition to furthering the overall understanding of various elements around the holding of human genetic material and information, such as; the magnitude, types of material and location of holdings across various sectors in Canada.

Subjects

  • Biotechnology
  • Science and technology

Data sources and methodology

Target population

The target population incorporates both the public sector and commercial sector. Generally, the public sector consists of the federal government departments and agencies listed under Schedules 1 and 2 of the Public Service Staff Relations Act. There are 86 departments and agencies covered under these schedules. The commercial sector includes all biotechnological, genetics and life sciences locations under NAICS code 541710 Research and Development in the Physical, Engineering and Life Sciences in Statistics Canada's Business Register, as of June 2002. The commercial sector population is also supplemented by establishments from Genome Canada's list of biotechnology companies.

Instrument design

The questionnaire was developed by Small Business and Special Surveys Division with input from all of the sponsors as well as other scientific professionals -- most notably at Health Canada and the Canadian Institute for Health Research. Comments from our reviewers helped to streamline the questionnaire and ensure the correct scientific terminology.

Sampling

This survey is a census.

Data sources

Data collection for this reference period: 2002-10-07 to 2003-01-21

Responding to this survey is voluntary.

Data are collected directly from survey respondents.

Data was collected using a paper mail-out, mail-back questionnaire. Precontact was made by telephone prior to the mail-out. Follow-up was also conducted by telephone.

View the Questionnaire(s) and reporting guide(s) .

Error detection

Questionnaires were manually edited and outliers detected as they were received during collection. A series of edit rules were developed and invalid or inconsistent entries were corrected using these rules. Follow-up was conducted for missing entries that could not be manually edited.

Imputation

The imputation method used for this survey is called "Random hot deck method". Under this method, a donor is randomly chosen from a specific group of firms. For the commercial sector, a donor was chosen randomly among all firms with similar characteristics and with a valid answer. Different donors could be used for a same receiver if more than one item needs to be imputed. For the public sector, donors were selected randomly without considering classification.

Estimation

Even though the survey is a census, the number of total non-response cases required reweighting the units. The design weights are adjusted by a factor to compensate for the non-response. The estimates are calculated from these new weights. No additional adjustment was undertaken to the weights.

Quality evaluation

The Human Genetic Material survey was the first survey of it's kind conducted in Canada. Currently there is no published data comparable to the data collected by the Human Genetic Material Survey.

Disclosure control

Statistics Canada is prohibited by law from releasing any data which would divulge information obtained under the Statistics Act that relates to any identifiable person, business or organization without the prior knowledge or the consent in writing of that person, business or organization. Various confidentiality rules are applied to all data that are released or published to prevent the publication or disclosure of any information deemed confidential. If necessary, data are suppressed to prevent direct or residual disclosure of identifiable data.

In the Human Genetic Material Survey, cells with a CV of 40% or greater were suppressed.

Data accuracy

Even though the survey is designed as a census survey, because not all of the population is observed, values for the figures of interest have to be estimated; consequently, the survey has some sampling error. This error can be expressed as a coefficient of variation (CV). The CV is a percentage that expresses the size of the standard error as a proportion of the estimate to which it is related. CVs are used to rate the quality of each estimate, using the following table.

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