Last Night of Homework!

Thank you for the discussion today on HeLa cells. I know we are winding down to the last day tomorrow and we are all tired! I’d like you to write a reflection of a half a page to a page (or more if you’d like) about your thoughts on informed consent, gene patenting and samples for research purposes. Please use the handouts and other science papers/news articles/podcasts/blogs or what have you that is from a reputable source to support your arguments.

Tomorrow will be fun and hopefully a meaningful end to CitSci!

My search yesterday on the support for samples without consent side returned this info from the Institutional Review Board at NYU Medical School. http://www.med.nyu.edu/irb/researchers/faq

“Research may be exempt from review when the only involvement of human subjects in the research falls into one of the following categories:

• Research conducted in established or commonly accepted educational settings, involving normal educational practices, such as (i) research on regular and special education instructional strategies, or (ii) research on the effectiveness of or the comparison among instructional techniques, curricula, or classroom management methods.
• Research involving the use of educational tests (cognitive, diagnostic, aptitude, achievement), survey procedures, interview procedures or observation of public behavior unless: (i) information obtained is recorded in such a manner that human subjects can be identified, directly or through identifiers linked to the subjects; and (ii) any disclosure of the human subjects’ responses outside the research could reasonably place the subjects at risk of criminal or civil liability or be damaging to the subjects’ financial standing, employability, or reputation. However, when a study involves children being interviewed, questioned or surveyed, that study must be reviewed by the IRB and may not be exempt. Similarly, studies involving children and observation of public behavior in which the Principal Investigator (or other investigator) participates in the activities being observed must be reviewed by the IRB.
• Research involving the use of educational tests (cognitive, diagnostic, aptitude, achievement), survey procedures (e.g. anonymous questionnaire), interview procedures, or observation of public behavior that is not otherwise exempt if: (i) the human subjects are elected or appointed public officials or candidates for public office; or (ii) federal statute(s) require(s) without exception that the confidentiality of the personally identifiable information will be maintained throughout the research and thereafter.
• Research, involving the collection or study of existing data, documents, records, pathological specimens, or diagnostic specimens, if these sources are publicly available or if the information is recorded by the investigator in such a manner that subjects cannot be identified, directly or through identifiers linked to the subjects.
• Research and demonstration projects which are conducted by or subject to the approval of department or agency heads, and which are designed to study, evaluate, or otherwise examine: (i) public benefit or service programs; (ii) procedures for obtaining benefits or services under those programs; (iii) possible changes in or alternatives to those programs or procedures; or (iv) possible changes in methods or levels of payment for benefits or services under those programs.
• Taste and food quality evaluation and consumer acceptance studies, (i) if wholesome foods without additives are consumed or (ii) if a food is consumed that contains a food ingredient at or below the level and for a use found to be safe, or agricultural chemical or environmental contaminant at or below the level found to be safe, by the Food and Drug Administration or approved by the Environmental Protection Agency or the Food Safety and Inspection Service of the U.S. Department of Agriculture.

Anonymous data are data that have been stripped of ready identifiers, including linking codes. Data may be anonymized to render a protocol eligible for IRB exemption if the investigator or data source strips the data of ready identifiers. The investigator or data source who anonymizes the data must be someone who has prior authorization to access the data (e.g., a hospital or treating physician). Importantly, however, anonymized data are not automatically considered de-identified data under the Privacy Rule.

Under the Privacy Rule, a covered entity may share data without restriction only if the data have been “de-identified.” De-identified data may contain linking codes if such codes are not derived from any identifier (e.g., SSN or Medical Record number) and are not used for any other purpose, provided that the covered entity does not disclose the code key to the researcher or anyone else. Although de-identified data may contain linking codes that meet the above criteria, a de-identified data set may not contain any of the 18 identifiers listed in the Privacy Rule. Researchers may not de-identify protected health information used in research for the purpose of using or disclosing the de-identified data to parties not identified in the authorization form, waiver application, or data use agreement, without the written approval of the NYU IRB.

The Privacy Rule permits a covered entity to disclose a limited data set to a researcher without authorization or waiver if the researcher has signed a data use agreement containing certain required elements. Limited data sets are not de-identified data, but permit the researcher to receive certain identifiers that must be otherwise be removed to render data de-identified (the identifiers permitted in a limited data set are listed in the Privacy Rule). Researchers who are seeking a limited data set from a covered entity should submit a signed copy of the covered entity’s data use agreement form to the NYU IRB along with the research protocol.”

Informed consent and gene patents

Below are a few items that might help support your arguments for tomorrow’s discussion.

This is a great Times piece written by Rebecca Skloot (the author who wrote about Henrietta Lacks) that provides a summary of the gene patent controversy.

Below is a TEDx talk by Tania Simoncelli who discusses the ethics in gene patenting.

Radiolab podcast “Henrietta’s tumor

Nature podcast

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Monday work!

Two more days of CitSci left! Can you believe it?! Hasn’t it been so much fun?!

Thank you for your enjoyable/interesting song requests and lab skills today- you are all lab stars! Even if you major in another subject, I highly recommend you to consider being a teaching fellow for CitSci or to try for a summer research project. You are all amazing and capable of being scientists.

Tonight Dr. Mark McKinley will speak at 7pm at Sosnoff. I will be there taking attendance. Please have two questions for the speaker or as homework to hand in tomorrow.

Tomorrow we are going to be counting your plaque assays so please watch the plaque assay counting video in the previous homework blog post! You know I will ask you about it 🙂

Please read Skloot, Chapter 4 The Birth of Hela for homework. I would like you to research two arguments to support using samples/cells from a patient without inform consent (this is possible without breaching ethical standards) and two arguments that are against using samples without informed consent. We will have a discussion/debate tomorrow. Be prepared to defend both sides. I want you to look for science papers or news articles or blog posts from reputable sources to backup your arguments.

If you have comments and questions to answer from me on your homeworks- I would like you to reply and address those comments/questions in a document or email indicating to me the homework it was and your answer. All of your responses are due by Wednesday at 4pm.

I will not be accepting any homework after 4pm Wednesday and will assess at that point based on the work you have turned in, your participation and attendance record whether you are S or U. Remember that over these last days you are still doing work to contribute to a Satisfactory.

See you at the talk tonight!

Borrelia and Lyme Disease

Many of you have mentioned that you’ve heard of Lyme Disease and that it is caused by exposure to ticks. What the flyers around campus don’t tell you is that Lyme Disease is actually caused by a bacteria. Here is a video that explains how the bacteria gets from the tick (or another reservoir) to a human’s blood.

Be an informed citizen about the science behind the disease!

Vaccination blog posts

In an essay published on aeon.com, a colleague of mine writes about the perspective of parents who are educated and still decide not to vaccinate their children. I thought this would be important and interesting to  consider and incorporate in your discussions about vaccination.

Also, here is a quantitative discussion about vaccination and fear of vaccination rates.

Another great source for peer reviewed information about science written in less technical language is the magazine The Scientist. Here is a recent post about a DNA vaccine designed for Zika Virus. We’ve reviewed a lot of the terms they mention in the post. Can you tell me how the vaccine works? (email me your answers).

Zika virus

One of my best friends and colleague in science communication and science endeavours, contributed to a blog post recently posted on The Rebel Mama. Taking away technical jargon, she talks about the zika virus, the infection you can get from zika virus and what you should know about zika.

Here is the link to “The Z Word

 

Give the public tools to trust scientists

Here is an article from Nature (passed on from my colleague Dr. Ali) that talks about the necessity to properly communicate science to the public. I think it will be important for those of you who are talking about public belief in your blog posts. I encourage you to find other sources as well as this to talk about the problem of miscommunication and misconceptions of science.

give-public-tools-to-trust-scientists

Weekend work!

Thank you for your work today in the lab and this morning in the discussions about cholera.

Please watch these videos

in preparation for the lab on Monday. Take notes and show me you’ve watched it. I’d also like you to look up and tell me in notes about transformation, transduction and plaque assays. I will email pdfs for the lab that we are doing Monday. You already have the transformation lab and I will email the docs for the plaque assay.

Weekend homework is the blog post (see previous homework night for details) and a news report or opinion piece about cholera and the scientific paper about the cholera outbreak that I handed out today. The news report or op/ed piece should be at least 300 words and you should talk about the data and refer to one of the Figures in the paper.

Have a great weekend! I will post some videos/podcasts about the Cholera outbreak and current vaccine plan that we didn’t get to go over today as well as some videos for your interest.