Genetic Research & Communal Narratives

By Davis, Dena S. | The Hastings Center Report, July-August 2004 | Go to article overview

Genetic Research & Communal Narratives


Davis, Dena S., The Hastings Center Report


The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far-ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution.

Scholars and laypeople alike are fascinated by the study of people's origins. (1) Are today's Cohanim--Jews who identify themselves as descendants of the hereditary priesthood of Biblical times--really the genetic descendants of those early priests? Did all "indigenous" North Americans journey across the Bering Straits, and if so, when? Just as individuals "seeking their roots" have made family genealogy into a national craze, scholars have turned their attention to the family histories of ethnic and linguistic groups. Tudor Parfitt points out that the groups most likely to search for and invoke genetic evidence of their beginnings are those whose origins are somewhat ambiguous, and that societies whose ethnic borders are least crisp are the most likely to be fascinated with the search for "who they are." He claims, "The whole late twentieth century obsession with 'roots' was fomented in the all-too-reducible American melting pot." (2) One difference, however, is that Aunt Mabel is usually interested in researching only her own family tree, while scholars often train their spotlights on groups of which they are not members.

Genetic research, and the increasing prominence of genetics in medicine and science, poses special problems for the ethics of research with human subjects. Genetics is basically about inheritance in families and larger groupings of people. Most commonly it is ethnic groups that are the object of research. However, groups defined by geography or political history can also have communal stakes in how genetic research is conceived, carried out, and described to the public) All this makes the implications of genetic research for communities or groups ever more important. (4)

Traditionally, informed consent to research has been an individualized process carried out by a researcher and a single subject. If a protocol requires a thousand recruits, consent is still seen as a thousand individual interactions. Some scholars have argued that genetic research is different, however, because the risks and benefits go well beyond the individuals who actually agree to take part, and devolve instead upon the group as a whole) Some commentators claim that group consultation, or even group consent, is a requirement of ethically acceptable population-based genetic research conducted on identifiable groups. (6)

One potential harm or benefit of genetic research is that it can either undermine or corroborate the group's creation story or communal narrative. The group or groups whose interests are at stake probably do not speak with one voice, however, and different subgroups may be differently placed with respect to the narrative; a creation story that is a source of power for one subgroup may serve to marginalize another subgroup. Given the melange of communities--and groups within the communities--a "community" decision whether or not to consent to the research is not always an effective approach to guarding the rights of research subjects.

What Genetics Research Can Show

Genetic researchers often focus on groups because certain genetic traits can be concentrated in groups of people who descended from a small number of common ancestors, especially if those people were also geographically or socially isolated, and if they favored marriage within the group. Even when a group has no higher incidence of a particular trait than the general population, it is easier to see genetic patterns that are associated with that trait if other genetic factors are more homogenous, If you are trying to figure out if there are any outward physical markers for schizophrenia, for example, possible patterns of congruence will stand out more sharply in a genetically homogenous group than in a highly diverse one. …

The rest of this article is only available to active members of Questia

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Buy instant access to cite pages or passages in MLA 8, MLA 7, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

(Einhorn 25)

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Note: primary sources have slightly different requirements for citation. Please see these guidelines for more information.

Cited article

Genetic Research & Communal Narratives
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Help
Full screen
Items saved from this article
  • Highlights & Notes
  • Citations
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

matching results for page

    Questia reader help

    How to highlight and cite specific passages

    1. Click or tap the first word you want to select.
    2. Click or tap the last word you want to select, and you’ll see everything in between get selected.
    3. You’ll then get a menu of options like creating a highlight or a citation from that passage of text.

    OK, got it!

    Cited passage

    Style
    Citations are available only to our active members.
    Buy instant access to cite pages or passages in MLA 8, MLA 7, APA and Chicago citation styles.

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

    "Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

    1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

    Cited passage

    Thanks for trying Questia!

    Please continue trying out our research tools, but please note, full functionality is available only to our active members.

    Your work will be lost once you leave this Web page.

    Buy instant access to save your work.

    Already a member? Log in now.

    Search by... Author
    Show... All Results Primary Sources Peer-reviewed

    Oops!

    An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.