Henrietta Lacks’ controversial cells get new protection under NIH

For decades, the immortal line of cells known as HeLa cells has been a crucial tool for researchers. But the cells’ use has also been the source of anxiety, confusion and frustration for the family of the woman, Henrietta Lacks, from whom the cells were taken without consent more than 60 years ago.

Now, the National Institutes of Health (NIH) has brokered a compromise between the desire of the Lacks family for privacy and the interests of research, at least with regard to genomic sequence information taken from the cells, officials announced today (Aug. 7).

According to the plan, researchers will need to apply for access to data on the HeLa genome sequence, and receive approval from a panel that includes members of the Lacks family, according to NIH Director Francis Collins and deputy director Kathy Hudson, who outlined the plan that appears Aug. 8 in the journal Nature. (The cells are code-named HeLa after the first two letters of Henrietta Lacks’ name.)

After discussion, the family unanimously agreed to this arrangement, Collins and Hudson wrote.

“We hope that (the agreement), and its genesis, will spur broader discussions regarding consent for future use of biospecimens, with a goal of fostering true partnerships between researchers and research participants,” Hudson and Collins said. [The 9 Most Bizarre Medical Conditions]

“The agreement represents a reasonable balance between the familys privacy interests and the open sharing that allows research to advance,” said Rebecca Dresser, a fellow at The Hastings Institute and a professor of ethics in medicine at Washington University in St. Louis, who was not involved in brokering the agreement.

“The most interesting praiseworthy element, in my view, is that the family will be participating in the group that decides whether to grant access to the sequence data.This will give them the control that many other members of the public say they want over how their samples are used,” Dresser told LiveScience. “It is also good that they will be involved, after so many years of being neglected.”

Without consent, again

Four months of discussions among the family, NIH officials and others began after a group at the European Molecular Biology Laboratory in March posted sequence data from a HeLa cell line in publicly accessible databases. Rebecca Skloot, author of the book “The Immortal Life of Henrietta Lacks” (Broadway Books, 2011), detailed the family’s frustration in an article in The New York Times.

“‘That is private family information,'” Skloot quoted Jeri Lacks-Whye, Lacks’ granddaughter, as saying. “‘It shouldn’t have been published without our consent.'”

Genetic information can be stigmatizing, Skloot wrote, and while employers and health insurance providers cannot use it to discriminate, no such legal protections exist for life insurance, disability coverage or long-term care.

The publication of the genomic data without the family’s consent called to mind the origin of the cell line itself.

In 1951, a doctor at Johns Hopkins Hospital took a specimen for culture from a cervical tumor that belonged to Henrietta Lacks, a then 31-year-old African-American woman, without informing her that he was doing so, or asking her consent, as is now required.

Good for science, not for the family

Cells from that biopsy became the first to successfully replicate continuously in culture (and hence be called immortal), and have since played a crucial role in many scientific breakthroughs. Researchers sent them into space to study the effects of zero gravity, and used them to develop the polio vaccine, for example. The cells are named in more than 70,000 research papers.

Lacks’ cancer killed her not long after the biopsy, but the problems didn’t end. Her family remained unaware of her immortal cells until 20 years later, when scientists began using her children in research without their knowledge, Skloot reported. Later, their medical records were released and published without consent.

In Nature, Collins and Hudson pointed out that the genome of HeLa cells is not identical to Lacks’ original genome. The cells carry the changes that made them cancerous, and have undergone further changes over the time they have spent in cell cultures.

Even so, they said, the sequences carry information with implications for her descendants.

The new NIH plan does not have the weight of law; although the organization funds most medical research in the U.S., researchers funded by other entities remain free to sequence HeLa cells and post the information anywhere.

“However, we urge the research community to act responsibly and honor the family’s wishes,” Collins and Hudson said.

A paper discussing the sequencing of a second line of HeLa cells appears in the same issue of Nature. It is the first paper to be published under the new NIH policy on use of HeLa genomic data.

A growing concern

Although the Lacks family’s situation is exceptional, privacy is a major concern for genomics. As a rule, science benefits from the easy exchange of information, and results of sequencing projects are often posted in open-access databases.

While donors’ identities are not included, Web sleuthing can sometimes find them, as one researcher reported in the Jan. 18 issue of the journal Science.

Under current U.S. research rules, samples taken in the course of a person’s medical care may be used in research without the person’s awareness or explicit consent if the information is recorded without identifying information.

“The problem is that absolute anonymity cannot be guaranteed in light of current knowledge and technology.Officials are considering whether to propose a change in the current rule,” Dresser said. “In surveys, focus groups, and interviews, many would-be research contributors say they want the power to consent to research uses of their samples.”

Copyright 2013 LiveScience, a TechMediaNetwork company. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Leave a Reply

Your email address will not be published. Required fields are marked *

universo-virtual.com

buytrendz.net

thisforall.net

benchpressgains.com

qthzb.com

mindhunter9.com

dwjqp1.com

secure-signup.net

ahaayy.com

soxtry.com

tressesindia.com

puresybian.com

krpano-chs.com

cre8workshop.com

hdkino.org

peixun021.com

qz786.com

utahperformingartscenter.org

maw-pr.com

zaaksen.com

ypxsptbfd7.com

worldqrmconference.com

shangyuwh.com

eejssdfsdfdfjsd.com

playminecraftfreeonline.com

trekvietnamtour.com

your-business-articles.com

essaywritingservice10.com

hindusamaaj.com

joggingvideo.com

wandercoups.com

onlinenewsofindia.com

worldgraphic-team.com

bnsrz.com

wormblaster.net

tongchengchuyange0004.com

internetknowing.com

breachurch.com

peachesnginburlesque.com

dataarchitectoo.com

clientfunnelformula.com

30pps.com

cherylroll.com

ks2252.com

webmanicura.com

osostore.com

softsmob.com

sofietsshotel.com

facetorch.com

nylawyerreview.com

apapromotions.com

shareparelli.com

goeaglepointe.com

thegreenmanpubphuket.com

karotorossian.com

publicsensor.com

taiwandefence.com

epcsur.com

odskc.com

inzziln.info

leaiiln.info

cq-oa.com

dqtianshun.com

southstills.com

tvtv98.com

thewellington-hotel.com

bccaipiao.com

colectoresindustrialesgs.com

shenanddcg.com

capriartfilmfestival.com

replicabreitlingsale.com

thaiamarinnewtoncorner.com

gkmcww.com

mbnkbj.com

andrewbrennandesign.com

cod54.com

luobinzhang.com

bartoysdirect.com

taquerialoscompadresdc.com

aaoodln.info

amcckln.info

drvrnln.info

dwabmln.info

fcsjoln.info

hlonxln.info

kcmeiln.info

kplrrln.info

fatcatoons.com

91guoys.com

signupforfreehosting.com

faithfirst.net

zjyc28.com

tongchengjinyeyouyue0004.com

nhuan6.com

oldgardensflowers.com

lightupthefloor.com

bahamamamas-stjohns.com

ly2818.com

905onthebay.com

fonemenu.com

notanothermovie.com

ukrainehighclassescort.com

meincmagazine.com

av-5858.com

yallerdawg.com

donkeythemovie.com

corporatehospitalitygroup.com

boboyy88.com

miteinander-lernen.com

dannayconsulting.com

officialtomsshoesoutletstore.com

forsale-amoxil-amoxicillin.net

generictadalafil-canada.net

guitarlessonseastlondon.com

lesliesrestaurants.com

mattyno9.com

nri-homeloans.com

rtgvisas-qatar.com

salbutamolventolinonline.net

sportsinjuries.info

topsedu.xyz

xmxm7.com

x332.xyz

sportstrainingblog.com

autopartspares.com

readguy.net

soniasegreto.com

bobbygdavis.com

wedsna.com

rgkntk.com

bkkmarketplace.com

zxqcwx.com

breakupprogram.com

boxcardc.com

unblockyoutubeindonesia.com

fabulousbookmark.com

beat-the.com

guatemala-sailfishing-vacations-charters.com

magie-marketing.com

kingstonliteracy.com

guitaraffinity.com

eurelookinggoodapparel.com

howtolosecheekfat.net

marioncma.org

oliviadavismusic.com

shantelcampbellrealestate.com

shopleborn13.com

topindiafree.com

v-visitors.net

qazwsxedcokmijn.com

parabis.net

terriesandelin.com

luxuryhomme.com

studyexpanse.com

ronoom.com

djjky.com

053hh.com

originbluei.com

baucishotel.com

33kkn.com

intrinsiqresearch.com

mariaescort-kiev.com

mymaguk.com

sponsored4u.com

crimsonclass.com

bataillenavale.com

searchtile.com

ze-stribrnych-struh.com

zenithalhype.com

modalpkv.com

bouisset-lafforgue.com

useupload.com

37r.net

autoankauf-muenster.com

bantinbongda.net

bilgius.com

brabustermagazine.com

indigrow.org

miicrosofts.net

mysmiletravel.com

selinasims.com

spellcubesapp.com

usa-faction.com

snn01.com

hope-kelley.com

bancodeprofissionais.com

zjccp99.com

liturgycreator.com

weedsmj.com

majorelenco.com

colcollect.com

androidnews-jp.com

hypoallergenicdogsnames.com

dailyupdatez.com

foodphotographyreviews.com

cricutcom-setup.com

chprowebdesign.com

katyrealty-kanepa.com

tasramar.com

bilgipinari.org

four-am.com

indiarepublicday.com

inquick-enbooks.com

iracmpi.com

kakaschoenen.com

lsm99flash.com

nana1255.com

ngen-niagara.com

technwzs.com

virtualonlinecasino1345.com

wallpapertop.net

nova-click.com

abeautifulcrazylife.com

diggmobile.com

denochemexicana.com

eventhalfkg.com

medcon-taiwan.com

life-himawari.com

myriamshomes.com

nightmarevue.com

allstarsru.com

bestofthebuckeyestate.com

bestofthefirststate.com

bestwireless7.com

declarationintermittent.com

findhereall.com

jingyou888.com

lsm99deal.com

lsm99galaxy.com

moozatech.com

nuagh.com

patliyo.com

philomenamagikz.net

rckouba.net

saturnunipessoallda.com

tallahasseefrolics.com

thematurehardcore.net

totalenvironment-inthatquietearth.com

velislavakaymakanova.com

vermontenergetic.com

sizam-design.com

kakakpintar.com

begorgeouslady.com

1800birks4u.com

2wheelstogo.com

6strip4you.com

bigdata-world.net

emailandco.net

gacapal.com

jharpost.com

krishnaastro.com

lsm99credit.com

mascalzonicampani.com

sitemapxml.org

thecityslums.net

topagh.com

flairnetwebdesign.com

bangkaeair.com

beneventocoupon.com

noternet.org

oqtive.com

smilebrightrx.com

decollage-etiquette.com

1millionbestdownloads.com

7658.info

bidbass.com

devlopworldtech.com

digitalmarketingrajkot.com

fluginfo.net

naqlafshk.com

passion-decouverte.com

playsirius.com

spacceleratorintl.com

stikyballs.com

top10way.com

yokidsyogurt.com

zszyhl.com

16firthcrescent.com

abogadolaboralistamd.com

apk2wap.com

aromacremeria.com

banparacard.com

bosmanraws.com

businessproviderblog.com

caltonosa.com

calvaryrevivalchurch.org

chastenedsoulwithabrokenheart.com

cheminotsgardcevennes.com

cooksspot.com

cqxzpt.com

deesywig.com

deltacartoonmaps.com

despixelsetdeshommes.com

duocoracaobrasileiro.com

fareshopbd.com

goodpainspills.com

kobisitecdn.com

makaigoods.com

mgs1454.com

piccadillyresidences.com

radiolaondafresca.com

rubendorf.com

searchengineimprov.com

sellmyhrvahome.com

shugahouseessentials.com

sonihullquad.com

subtractkilos.com

valeriekelmansky.com

vipasdigitalmarketing.com

voolivrerj.com

zeelonggroup.com

1015southrockhill.com

10x10b.com

111-online-casinos.com

191cb.com

3665arpentunitd.com

aitesonics.com

bag-shokunin.com

brightotech.com

communication-digitale-services.com

covoakland.org

dariaprimapack.com

freefortniteaccountss.com

gatebizglobal.com

global1entertainmentnews.com

greatytene.com

hiroshiwakita.com

iktodaypk.com

jahatsakong.com

meadowbrookgolfgroup.com

newsbharati.net

platinumstudiosdesign.com

slotxogamesplay.com

strikestaruk.com

trucosdefortnite.com

ufabetrune.com

weddedtowhitmore.com

12940brycecanyonunitb.com

1311dietrichoaks.com

2monarchtraceunit303.com

601legendhill.com

850elaine.com

adieusolasomade.com

andora-ke.com

bestslotxogames.com

cannagomcallen.com

endlesslyhot.com

iestpjva.com

ouqprint.com

pwmaplefest.com

qtylmr.com

rb88betting.com

buscadogues.com

1007macfm.com

born-wild.com

growthinvests.com

promocode-casino.com

proyectogalgoargentina.com

wbthompson-art.com

whitemountainwheels.com

7thavehvl.com

developmethis.com

funkydogbowties.com

travelodgegrandjunction.com

gao-town.com

globalmarketsuite.com

blogshippo.com

hdbka.com

proboards67.com

outletonline-michaelkors.com

kalkis-research.com

thuthuatit.net

buckcash.com

hollistercanada.com

docterror.com

asadart.com

vmayke.org

erwincomputers.com

dirimart.org

okkii.com

loteriasdecehegin.com

mountanalog.com

healingtaobritain.com

ttxmonitor.com

bamthemes.com

nwordpress.com

11bolabonanza.com

avgo.top