Question

Watch the video on ethical data collection (Links to an external site.) and read the following about Henrietta Lacks:

Henrietta’s Dance (Links to an external site.)
Review of Rebecca Skloot, The Immortal Life of Henrietta Lacks (Links to an external site.)
Taking the Least of You (Links to an external site.)
ACTIVITY INSTRUCTIONS

First, let’s start with a question based on your opinion. Consider this:

“Most Americans have their tissue on file somewhere. In 1999 the RAND Corporation published a report that more than 307 million tissue samples from more than 178 million people were stored in the United States. This number, the report said, was increasing by more than 20 million samples each year. These samples come from routine medical tests, operations, clinical trials, and research donations.” (See the New York Times article)

What do you think the repercussions would be if scientists were required to inform and get consent? Would restricting this impede scientific advancements and perhaps harm the public good?

After reading and viewing the materials on Henrietta Lacks, answer the following questions:

At the time of the incident (prior to the Belmont Report), was there an ethical breach in the medical care that Henrietta Lacks received?
Was there an ethical breach by the researchers who received Henrietta Lacks cells?

If this happened today:

What kind of “harm” may have been done to Henrietta or her family by the researchers (intentionally or unintentionally)?
Is there an ethical consequence for the Lacks family that we should be concerned about?
Identify other examples, beyond those in the video, of how data is being collected and used and the potential ethical standards that may be violated. How do you recommend that these situations be handled?

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What do you think the repercussions would be if scientists were required to inform and get consent

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