Newsletter: January 2014

Chapter members receive recognition

Kudos are in order to the following North Central Chapter members for their recent accomplishments and recognition:

Jane Buchwald and Anne Marie Weber-Main were recognized at AMWA’s 2013 annual conference in Columbus.

Jane received the Eric W. Martin Award, honoring excellence in medical writing. This award is given in recognition of outstanding articles that were written and published by members of AMWA in the previous year. Jane’s winning publication was titled “A Review of Unmet Needs in Obesity Management and Obesity Surgery” in the journal Obesity Surgery (March 2012).

Anne Marie was recognized with an AMWA Fellowship. Fellowships are given annually to up to three AMWA members whose efforts have significantly influenced the goals and activities of AMWA, and whose professional accomplishments have earned them recognition from their peers. An AMWA member since 1998, Anne Marie has been actively involved at the chapter and national levels. Read more at http://www.amwa.org/journal.

Alyssa Quiggle and Felicia Cochran both earned Advanced Certificates from AMWA.

AMWA certificate programs allow medical communicators to increase their knowledge, refresh their skills, and investigate new areas of practice. Credits can be earned both through self-study modules and face-to-face workshop attendance at conferences.*

AMWA currently offers certificate programs in Essential Skills, Business, Composition and Publication, Concepts in Science and Medicine, and Regulatory and Research.  Core, Science Fundamentals, and Advanced workshops are offered for people who were previously enrolled in those certificate programs (which have been discontinued). Learn more at http://www.amwa.org/amwa_wks_certs.

Congratulations to all!

 *This news just in from AMWA: 

Save the dates in 2014 now to attend the AMWA Annual Conference or an AMWA chapter conference in order to participate in the workshops offerings toward AMWA certificates. Registration for the Spring 2014 chapter conferences will open soon, beginning with the Mid-Atlantic Chapter Conference. 

If traveling is difficult, consider studying at home using the AMWA self-study modules. Essential Ethics for Medical Communicators (required for the Essential Skills certificate) and Tables and Graphs are on sale at the discounted rate of $125.00 per book for AMWA members. 

Chapter updates 

•  Our next book club meeting is Monday, January 27: 11 a.m. at The Egg & I (2550 University Ave., just west of Hwy. 280 near the Minneapolis-St. Paul border). We are reading The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.

•  Our resource list (see left side menu on Chapter home page) is now hyperlinked. Thanks again to Sharon Rosen for creating the list, and to Naomi Ruff for creating the links!

The HeLa Genome and Genetic Privacy 

By Paul W. Mamula, PhD

Publication of two HeLa cell line genome sequences triggered a controversy about breaches in genetic privacy that was eventually settled amicably by members of the Henrietta Lacks family and the National Institutes of Health (NIH). However, the resolution provoked additional questions about balancing research, privacy, and the existing federal guidelines.

Creating the HeLa Cell Line

The creation of the HeLa cell line is beautifully detailed in Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks. In addition to being a highly readable account of the cell line’s creation (see North Central AMWA Newsletter, May, 2011), the book provided a thought-provoking story that presented a fascinating view of the evolution of biomedical research. The contrast between society, medicine, and research then and now is stark and shocking. The book prompted several interesting questions about how such research should be conducted in the future.

The Controversial Sequences

Advances in genomic sequencing have allowed entire genomes to be sequenced rapidly and relatively cheaply. The HeLa cell line was one such line targeted for analysis. Established cell lines are immortal (can divide an unlimited number of times in the laboratory) and can have many genetic changes. The identifiable genetic changes introduced during multiple passages (in which cells are grown again and again over time) could help explain questions about the line’s origin and evolution over time. Thus, the HeLa cell line would be an interesting subject for deciphering genomic changes between it and that of normal cells.

A group from the European Molecular Biology Laboratory (EMBL) sequenced the first genome of a HeLa cell line and published their findings in March 2013. The investigators initially made the sequence data publicly available for downloading with no restrictions. Later, a group from the University of Washington sequenced a second HeLa genome and several variant strains.1 The latter paper was set to be published in the journal Nature a few months after the EMBL article appeared. The two publications triggered concerns about issues of genetic privacy for Henrietta Lacks—the woman from whose cells the cell line was derived—and more importantly, for her descendants.

Concerns voiced by the Lacks family as well as the impending publication of the second HeLa cell line genome prompted the EMBL to take down their sequence data, and postponement of the NIH publication. The second paper was not published until August 2013, after Francis S. Collins, NIH Director, and Kathy L. Hudson, deputy director for science, outreach, and policy at NIH, had three meetings with the Lacks family to discuss the research and decide how to proceed with issues of access to the data.

Access to Information versus Genetic Privacy

The Lacks family’s concerns about possible uses of the data were well founded. The author Rebecca Skloot noted that in an experiment, a group of scientists uploaded the EMBL HeLa genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. An analysis produced a report full of personal information about Henrietta Lacks and her family.2 While that may be good for science, it raises considerable ethical and privacy concerns.

The NIH agreed to give the Lacks family a say in who accesses the genetic information.3 The agreement reached by the Lacks family and the NIH allows the data from both genome studies to be stored in the Institute’s Database of Genotypes and Phenotypes. The HeLa Genome Data Access Working Group at the NIH will review applications for use of the information, and it gives two Lacks family members seats on the review board. Researchers seeking to use the data can apply for access and are required to submit annual reports about their research.

The genetic sequence of the HeLa cell line and 8 additional strains1 had little point variation (single DNA base changes) with few new mutations accumulating after early passaging. In cells that are passaged, mutations often occur and appear in later cells. Comparison of early and late passages can then differ. In addition, the investigators were able to identify integrated sequences of human papilloma virus type 18 (HPV-18), a virus associated with human cervical cancer, the type of cancer that Henrietta Lacks had.

Policy and the Future

Martin Bobrow, chair of the Expert Advisory Group on Data Access notes that linking data (e.g., repeated use of “de-identified” genetic data in multiple studies) is likely to increase the risk of individuals being identified.4 One study has demonstrated that it is possible to identify anonymous (de-identified) individuals from their genetic information in databases using just a few sequences and recreational genealogy databases.5 The HeLa case is unique and will be unlikely to provide a definitive answer for other types of cases, eg, individual sequences being placed in databases. Therefore, additional policy will have to be developed for future cases. With more research being based on linked sets of data, the important challenges will be understanding how the data are being used, quantifying the risks, and devising sufficient governance that allows innovative use of data to flourish while simultaneously protecting participant confidentiality to the greatest extent possible.

Dr Collins notes that under current US Federal Guidelines, it is still possible to use specimens and generate sequence data without the knowledge or permission of the person providing the sample, as long as the biospecimen is de-identified. 6 He stated that reforms are being considered for protection of human subjects in research, partly because advances in genomics and computing have made non-identifiability illusory. 6

For details about the decision and interviews with Dr Collins, see the 8 Aug 2013 issue of Nature.

References and Additional Reading

1. Adey A, Burton JN, Kitzman JO, et al. The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line. Nature 2013 Aug 8;500(7461):207-11

2. Skloot R. The immortal life of Henrietta Lacks, the sequel. The NY Times Sunday Review. March 24, 2013, p 4.

3. Zimmer C. Research wrong is finally righted. Minneapolis Star Tribune, Aug 8, 2013, page A1,9

4. Bobrow M. Balancing privacy with public benefit. Nature 2013 Aug 8;500(7461):123

5. Gymrek M, McGuire AL, Golan, et al. Identifying personal genomes by surname interference. Science 2013 Jan 18;339(6117):321-4

6. FS, Hudson KL. Family matters [Comment]. Nature 2013 Aug 8;500(7461):141-2